Well, i went to my first Pain Management overview class on Tuesday morning, with little idea of what to expect. As my new doctor had pointed out to me, fibromyalgia patients tend to have trouble trusting their medical staff, and are "suspicious." (She said suspiciously.) So i showed up by 10 a.m. with my notebook in hand, and a (hopefully) open mind. i'm an avid note taker--it helps the information gel in my brain. i hear it, i write it with my left hand, i see it. And maybe, just maybe, with it surfing my brainwaves in three forms, i remember it.
i must say, i was pleasantly surprised. The tone was positive and affirming. Someone in the medical world who acted like they believed we were actually in pain! As i first walked into the room i thought, "Crap--everybody here is way older than me!" and trust me, i am no longer in the youthful category. But then i saw a woman with long hair the color of mine, but i think hers was that color naturally, probably mid 30's. And a mid 20's girl walked in, and i thought "wow, she REALLY thinks we are ALL a lot older than her." And she would be right.
The doctor who heads up the clinic spoke to us first. He helped put the program together back in 1979 at the Union City Kaiser here in California. He gave a great overview of the pain process, complete with a handout with drawings (a lovely addition to my notes.) He spoke of the pain gate, and what opens it and what closes it. They will help us close the gate. They do not promise to make the pain go away, but they will work with us in many ways physically, mentally, medicinally to manage the pain. Now, i'd agree that most of us in the room would prefer to just not HAVE the pain, but apparently the good doctor can't actually promise that. But they promise to believe we are experiencing the pain, and that helps me right there.
As he, Dr Frank, explained, "We doctors love numbers! We love diabetes--there are numbers, there are tests. Cholesterol--we can measure that. But chronic pain, only you can help us understand your pain. And your doctor has agreed as part of this program to do whatever we recommend. So, as of today, I am in charge of your pain medication."
Personally, i tend to be a "tough it out" person with the whole pain medication thing. i fear narcotics, especially having had a parent with some strong addiction history with pills. But when i am in the most pain physically, which then seems to affect me mentally, i will give in and take something. Apparently that isn't the most effective way to do it, but my fear overrules my need. i then do less so i am in less pain, and end up in that "deconditioned" state, where i become too tired to move. Then i feel guilty because it has become All My Fault that i am in this shape.
We had a ten minute break after the first hour, so i went walking. That sitting in an upright chair for extended periods is interesting at best. It being a pain management clinic, they at least have decent chairs, and made it clear we can walk or stand or whatever works the best for us during the meetings. That's a good thing.
Second hour we had a physical therapist talk to us. He took us through a very telling exercise. First we brain stormed words for what the pain feels like (sharp, shooting, aching, etc) then words for what thoughts and feelings we have about the pain (anxious, hopeless, depressed, angry and so on.) The third list was words for how the pain affects our relationships (more anxiety, anger, frustration and such.) "The first list," he said, "is the facts associated with the pain. The second and third lists," he said gesturing their direction, "are the suffering involved with the pain. The pain is a fact, but the suffering is optional. And we can help you with that."
Damn--and we all wanted them to just make the pain go away. i suppose i should have gotten a clue from that word "chronic" that it ain't goin' nowhere.
People dynamics were fascinating to me, as always. There were a couple of men who wanted to use the class as a vehicle to hear themselves talk about how awful their pain is and how hard it all is. i understand it's hard. We are all, HELLO, in a chronic pain program. The facilitator was good to bring them back into focus. As we were each sharing ONE goal we hoped to achieve as a result of the program, those particular guys would try to again go off into how hard their life is and how awful their pain is and pick a goal such as "getting rid of the pain." The facilitator said, flat out, "Pick another goal." Was the manly man with his painly pain not listening?? Some pain does not go away.
It appears i will enjoy the program, especially watching the people, seeing who "gets" it and who refuses to. i bet a couple of manly men will not return. The clinic does not promise them a magic pill and magic solution, so why should they bother.
One woman there has had MS for years, and is frustrated with other people not getting it. Her goal, simply put, is to be able to cook herself meals. i said my goal has always been to NOT cook meals, but realistically i do understand how frustrating that would be to not be able to stand long enough to prepare yourself food. i'm just a smart mouth and can't seem to control that. As in when physical-therapist-guy was making the lists of feelings etc and asking "who in here has felt this way about their pain?" and i said, "All of these things really do seem to apply to me, and i would keep my hand up, but it hurts too much." He smiled. A little chronic pain humor, who doesn't need that?
We'll see what next week brings, but at the moment my Hope Meter is up a few points.