They might as well call it hypervigilance.
I gave in back in September to my neurologist's suggestion that I see a pain management specialist. He thought that I might get some relief from some of the new procedures that he could not offer me. He had been seeing me for over a year and couldn't quite get my pain well-controlled, so I agreed to try this.
The first thing I was met with was suspicion. My husband was with me in the exam room, and I feel now like he may have been a liability (which is ridiculous). He has longer hair, and I felt like the doctor was speaking based on that when he said, "You will be asked to submit to random drug testing to make sure you aren't taking anything else in addition to what I prescribe. Usually the first time I find marijuana, it's a slap on the wrist. If I find it again, it's a problem." Hubby and I looked at each other, surprised, and I said, "I don't use marijuana or anything else like that!"
I had to, like all pain patients, sign a "contract" in which I agreed to two pages of rules, such as "I will keep my medication secure and protected from others." Reasonable. "I understand that I cannot regulate my dosage on my own and will only take as much as my doctor prescribes." And the list went on. I felt like it was suspect the patient of drug-seeking behavior until proven otherwise.
On a spinal pain support board, I'm learning that my opinion is shared by many others. The doctors are so scared of the DEA and of lawsuits that they can't treat us with respect. I have never been addicted to anything (and believe me, I tried quite a few things in my youth). It doesn't seem to be in my genes, though some in my family have been visited by the addiction fairy. There are days (albeit fewer these days) in which I need absolutely nothing for pain. But if I overdo it just once by mopping the floor, scrubbing the bathroom, or even exercising too vigorously, I can end up in bed with severe pain.
It happened to me last week. My last post said I was dealing with a headache. Well, it spread. It moved into my shoulders and all over both sides of my head. I called in sick for the afternoon on Friday and spent most of that day and the next in bed. My prescribed amount of medication wasn't helping, so I increased it slightly (*gasp* a no-no!). But I also called the pain specialist's office and spoke to the nurse. I described the kind of pain I was in and asked for either a new prescription or a suggestion from the doctor - should I go to the ER? When I finally got a callback at 4:30 p.m., after the doctor had left for the weekend, I was told I could increase my dose to once every 8 hours. OMG. I would have gone directly to the ER, but my husband was stuck in rush hour traffic in Baltimore in the rain surrounded by car accidents, trying to go pick up our daughter from the hospital (where she had been for 2 weeks) to take her home. It was a pickle, indeed.
The suggestions from my buddies on the spine board include: be contrite and polite to all of the office staff (which I am), never seem to really want more meds, ask for a prescription for "break-through" pain (which is what they describe my weekend as), and tell the doctor what is working and what is not working. So I am armed with that information for my morning appointment with the nurse practitioner.
There is so much more. I feel that every time I communicate with the staff at this office, I have to be SO careful, lest I be labeled a drug-seeker (which I am not). I just need to get my pain well enough controlled so that I can function. I've had to use a lot of sick days lately because all of these procedures (epidural spinal injections - first one worked, second one left me in even more pain, facet nerve blocks - did not work as expected, multiple surgeries) all leave me in more pain than I was in to begin with. I try to be a good patient, a contrite patient, a patient who is in pain but doesn't really want the meds. It's very frustrating.
Pain is the last frontier. Medicine doesn't really understand it and can't quite quantify it. We have a ridiculously inadequate lexicon with which to describe it - sharp, burning, aching, throbbing - there is no "all of the above, in waves." If I could retain a meditative state for long periods of time and still work, I'd be alright. The nurses are always surprised that I drop into a meditative state and don't seem to feel the needles, probing, and deep invasion that comes with these procedures. I feel them afterward but not during. But I cannot meditate and work at the same time.
Right now I'm off to heat up my pain pack. I was up three times last night: twice for medication and once for an ice pack. A good night's sleep would be helpful, I know. But because I had the facet injections yesterday, my pain was increased greatly. That is not what the doctor expected, so I have to go back next Monday and do it again. I'm really trying to cooperate and do what I need to do, but I may reach a limit. These techniques aren't working for me.
And before anyone asks - yes, I've tried acupuncture (for nearly a year), Chinese herbal medicine, meditation, exercise, massage, on and on and on. I just feel I'm running out of options. The majority of this pain came after my neck fusion surgery, nearly two years ago. I am seriously considering seeing another surgeon (won't go back to this one ever) to have my fusion and my cervical MRI evaluated to see if there's something that can be done surgically to correct all of this. I wouldn't relish the thought, but if it helped .. It certainly would be better than dealing with these pain specialists. I hate feeling like a criminal because I'm in pain.
That's my rant for the day. I'm off to get that heat pack.
Peace - D