What Causes the Pain?
I get asked about my physical pain a lot. Rather than repeat over and over, I'll post a full summary here so it is easy for me to refer to.
My chronic pain started one morning in late December 1999. I woke up and couldn't move without wanting to scream, cry or both. I had experienced a major muscle spasm in my lower back several years earlier so I didn't panic. Unlike that time I didn't get better, nothing was relieving the pain and I started to feel rather anxious about it. In 2000 my doctor sent me in for an MRI and then sent me along to a neurosurgeon to have the results explained to me. On the films he pointed out how my first three lower vertebral discs were bulging out (S1/L5, L5/L4, L4/L3). The rather hazy diagnosis for all of this was Degenerative Disc Disease.
I was given prescriptions for vicodan and very high doses of ibuprofen, sent to a physical therapist, and to water therapy as well. The physical therapists arranged for me to have a TENS unit. It didn't really get better, the physical therapists, who were more accustomed to dealing with injury as opposed to chronic condition, grew frustrated with my lack of "progress".
The first few years were struggle to learn how to adjust to being in pain all of the time. Really, ALL the time. No break in the pain, just variation on how bad it is. I have come to describe it to people as "noise". There is always the noise-information of my pain. Always. I am in pain if I am awake or asleep. The only variation is if the volume is at 3 (mildly, but constantly, irritating) or 10 (worst pain ever). Since 1999 my pain level has never been at 0 (no pain).
The pain medications that were prescribed generally made me feel worse. The ibuprofen upset my stomach. It turns out that I am allergic to opiates, they not only caused stomach upset (a common complaint) but I would break out in hives, sometimes waking up with huge scrapes all over my body when I'd start scratching in my sleep. To take even half a dose of pain killer I must take Benedryl as well.
Every day was exhausting those first years. It was all I could do to wake up and drag myself to work. Thankfully I could telecommute some days when I was too exhausted to go into the office. In the evenings I would just collapse into bed. It was as if my life came to a standstill. I would work and collapse, spending the entire weekend resting enough to start all over again.
By 2002 I was exhausted physically and emotionally. What strength I had once had from regular water exercise, walking and lap swimming was gone. I had very little flexibility left at all. I wasn't a candidate for surgery because of where the discs where degenerating. There was nothing to be done but suggest body work, more pills, and some kind of exercise.
Having first learned to swim when I was still a baby I've always felt at home in the water. While unemployed in 2002 I started to go to water exercise classes again. First I went to a class aimed at slow movements and low intensity. It felt so good to be doing something with my body and I started to get some flexibility and strength back. After a few months of this class I moved into a regular class, then back to some lap swimming, and eventually settling into a deep water exercise class where I would experience zero impact in my joints, especially my hips and spine where the pain was worst.
In 2003 I started studying yoga. It was incredibly hard, I had to stop and rest a lot regardless of what the other students were doing. I could tell it made a difference though so I kept with it even though it sometimes really hurt. Even more than water exercise, yoga let me help treat and work with my own pain, which was very powerful. I'd also lost around 90 pounds by this time. I felt like I had a lot more energy even though the pain was still pretty intense.
Another MRI in late 2004 revealed good and bad news. The third disc (L4/L3) was fine. There was no mention of anything unusual about it at all! The bad news was my first vertebral disk, between the sacrum and the first lumbar vertebra. This disc had ruptured sideways (which bit unusual). The middle disc (L5/L4) was still bulging.
The ruptured disc causes nerve compression (sciatic nerve especially) on both sides of my legs; the left particularly so. Quite often there is a very low level of spasm that is happening most of the time in my lower back and hips. Sitting, particularly with my legs down (how one normally sits in a chair), aggravates the pain.
Over the past 9 years I've become very adept at managing the pain. A combination of body work (massage, physical, and craniosacral therapies), yoga, weight loss, rest, exercise, and water/heat therapy I use has actually lowered the level of pain I'm in over all. When I interrupt those things my pain increases. Occasionally that increase appears as an overwhelming spike of "noise" that sends me to rest more and take a muscle relaxant. Sometimes the only interruption comes from something like stumbling over my own feet or sneezing without holding onto something or sitting down first.
Most of the time people do not know I'm in pain. It is an "invisible" condition that sometimes causes people to question things like turning down invitations because I need rest. Eventually, if someone spends enough time around me, they will see evidence of what I work with. Sometimes it is only that they catch me on days when I'm very tired and am limping or dragging my left leg a little. Once in a while I get caught off guard by much more major muscle spasms and am barely able to breath much less walk.
It is such a small thing really, but our bodies are so carefully, precisely assembled and nerves are so sensitive that even being pressed into a few millimeters causes significant response. My spine is a constant reminder to me of how even a small change causes a much larger impact. It is also a reminder that pain is merely information our body gives us and I am not defined by my pain.
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