Stephanie (collacentaur) wrote,

  • Mood:

Wait, what pain? (for those who were confused)

ourika reminded me yesterday that I haven't really discussed the insufficiently-diagnosed-condition-that-causes-me-pain publically online, and so for her and possibly some of my other long-distance friends, my whiny post on Saturday was a bit surprising and unclear.

I do usually avoid talking about it when it's not immediately relevant. So many people, including some of my friends, have problems so much worse than mine. I feel like a selfish jerk when I complain about my issues, as if I'm trying to compete with or trivialize their real problems. That absolutely is not my intent. Even on my worst days, I can still function and live my life, so I feel like I should just shut up and get on with it, and keep it between me and my doctor. Saturday just took me by surprise.

However, since ourika asked, here's an extended explanation and backstory:

History: I can't be sure exactly when I started noticing the symptoms (described below). Looking back, I think there were probably related moments even in college, but I didn’t make that connection until much later. I do know that by September 2005, I had recognized enough of a pattern to be describing it as arthritis and note it as a concern to talk to a doctor about. That was the first time I attempted to find a doctor, and got derailed by circumstances and anxiety.

Over the course of the following year, the number, frequency, and intensity of the symptoms increased. I did some online reading on various conditions that cause joint pain, and eventually came to the conclusion that the best match I could find was rheumatoid arthritis (RA). As that is a degenerative, auto-immune disorder, which is pretty damn scary, I promptly and immaturely decided that as long as I wasn't told otherwise by a doctor I was Perfectly Healthy Thank You.

In April 2007, my father was diagnosed with rheumatoid arthritis. Neither of us had discussed our respective difficulties with the other prior to his diagnosis and beginning treatment. He was a bit surprised when I knew a great deal about it already. He is in much worse shape than I am. Then again, he's also 30 years older than I am.

By the fall of 2008, I had been living with chronic pain, albeit usually mild, for years. Bad pain days had increased to the point where I was taking painkillers more days than I was off them (more about that below). That and the other symptoms were beginning to force me to rework my life around them, instead of just living with them. Between that, and my anxiety spiraling out of control, I finally found a doctor and made an appointment. I saw him in January and February 2009. I'll get back to that.

Symptoms: The first symptoms I noticed were pain and stiffness in the knuckles closest to the palm of the first two fingers of both hands. They continue to be the worst-affected, and are the first to bother me and last to stop in any particular bout. There is also sometimes swelling, not over the knuckle on the back of the hand, which is a classic symptom and would probably have lead to a quick diagnosis, but on the palm side. Unfortunately, a little bit of extra puffiness on a fat girl is hard to demonstrate to anyone who doesn't see and feel my hands every day. The affected joints are usually also very warm, and sometimes redden, as typical with any sort of inflammation.

Over time, this has spread to affect the other knuckles and the other fingers. It also happens regularly to the corresponding joints of the feet and toes, and to my shoulders (the actual shoulder joints, not the place where the muscles are that we call the shoulders). Occasionally it has also affected my hips, knees, wrists, or elbows, but only on especially bad days. Also, sometimes all of the joints are just stiff and creaky, as well as the specific pains.

The pain is usually a dull ache, but sometimes a sharp ache. Its intensity varies from "oh, gee, there it is again, that's irritating" to "Holy God!" As for the frequency of it, during the period when the pain was chronic, the best metaphor for it that I could come up with was swimming in the ocean. If you go out past where the waves break to where they just gently roll past, you can float at the surface, bobbing up and down a little as the waves wash past you. A particularly big wave, or the wake of a boat going past, will make you work to keep your head above water. That's kind of how it feels. Also, the liquid aspect is very relevant to my perception of it. It really does feel like the pain is washing through me, sometimes.

Putting pressure on the joints hurts when they are affected. The joints also weaken, and may not really bear my weight, in the feet and legs, or cannot apply the pressure needed to perform every-day tasks, in my hands. The weakness is still present even if the pain is removed. In the case of my hands, there are things I simply can no longer do, or can't do as well as I used to, even on the best of days when there is no pain, no stiffness, no other symptoms at all.

In addition, sometimes there's just a general feeling of not being well. I know that may sound a little strange. I thought it was totally crazy, and assumed it was a quirk in my perception of something else, until I learned that it's actually a symptom of RA and other things.

There's no sure way to predict bad days and good days. It's worse in winter and spring, better in summer and fall. Significant pressure changes - like nor'easters following a week of gorgeous weather - tend to be bad. It's worse if I'm not sleeping well. But the ups and downs still seem random. It does not seem to be related to my menstrual cycle at all. It does not seem to be related to my mood, although certainly pain has a negative effect on moods.

Painkillers will help with the pain. Tylenol is more effective than Advil, and the Tylenol for Arthritis Pain really is more effective than the basic stuff, although that may perhaps be psychosomatic. It is, at least, more likely to come in easy-open bottles. They don't do anything for the swelling or stiffness. I usually try not to take them unless the pain gets to the point where it could impede my ability to function. Pain is the body's warning signal that something is wrong, and sometimes that's there for my own good. For example, if I had taken Tylenol for my hands before leaving home this Saturday, I would have fallen flat on my face when I tried to get out of the car in PA, because I probably wouldn't have noticed my feet and knee stiffening up. Instead, the pain let me know to adjust how I moved.

Immersion in warm water also helps. I wash a lot of dishes when my hands are bothering me. It's a shame I dislike baths so much. There's a hot tub at my dream house.

Doctor: So, when I went to the doctor last year, he listened to what I had to say. Because there are no obvious visual symptoms, and none at all when it's not bothering me, he felt RA was unlikely. He thought that the most likely answer was that the pain was partnered with my depression and anxiety, since all three use the same pathways in the brain. I did some reading on that at the time, and it did sound plausible. Since he was going to be putting me on an anti-depressant anyway, he wanted to hold off on doing anything else to see if that would solve the problem. I agreed, but insisted that he at least test me for the rheumatoid factor. He agreed to that, and actually put in for a full panel of blood tests for several kinds of arthritis, fibromyalgia, Lyme disease, and I don't even know what else which can cause joint pain. Everything came back negative/normal. I have a copy of the results.

The anti-depressant did work wonders. For the first six months, up through about the end of August, I had no joint pain at all, as well as no depression and very little anxiety. Since then, I have had occasional periods of mild pain, and this weekend was bad. The depression and anxiety also became stronger after August. All continue to be much better than I was when unmedicated. This leads me to believe that my biochemistry adjusted to the dosage, and I need to be bumped up a little.

However, it did not stop the swelling and stiffness from occurring. Those symptoms have continued to occur without the pain. I still can't reliably open jars and bottles with twist-tops. I can't use a standard stick pen or pencil for more than a word or two without it hurting, and so I supply my own pens at work and wherever else I go. I don't hold things with just my fingertips if I can avoid it, because I can't be certain my fingers will be able to maintain the necessary pressure. Things really do just fall out of my hands and surprise me because of that. I long ago gave up needlepoint (which I hope I'll be able to get back to some day) and painting miniatures (which I'll probably never do again - anybody interested in a Warhammer Lizardman army?) I do word and number puzzles on the computer, not in magazines. Some days, I struggle to exert enough force against the elastic to be able to fasten my bra. When my fingers are stiff, my typing speed and accuracy both slow considerably. There are always more little things. I don't even think about it most of the time. I just keep going, making whatever adjustments I need.

This indicates to me that there must be something more going on than just depression-related pain. I'm still inclined to think that it's some form of arthritis, but I'm in the very early stages where most people wouldn't notice it yet, and nothing's showing up on the bloodwork because it's not that bad yet, but because of the interaction between pain and depression and anxiety, I'm having more pain than would otherwise be normal for a very early stage. My bet would still be on rheumatoid arthritis. However, I'm certainly willing to accept other premises and see what makes sense. I'll talk to the doctor about it and see what he thinks.

This is almost certainly way more detail than anyone else could possibly want, but it's good for me to have it written out for my records.
Tags: health

  • (no subject)

    It is so much more fun to be obsessing over how best to clean mouse pee off My Little Ponies instead of what the surgeon will say tomorrow.

  • (no subject)

    I stop by to skim briefly and catch up. An hour later, I realize that I can't even say "Hey, good job with what you're doing, I support…

  • Oops

    So, that last post was supposed to be under a filter, and I ended up submitting it too late at night and missed that. Apologies to those whose real…

  • Post a new comment


    default userpic

    Your IP address will be recorded 

    When you submit the form an invisible reCAPTCHA check will be performed.
    You must follow the Privacy Policy and Google Terms of use.