Sunday, August 26, 2007

When Seven is a Good Day

Aching. Burning. Cramping. Cutting. Deep. Dull. Excruciating. Exhausting. Gnawing. Intense. Nagging. Nauseating. Numb. Penetrating. Pinching. Pins and needles. Radiating. Sharp. Shooting. Stabbing. Stinging. Throbbing.

For close to two decades, pain has been my nearly constant companion. I cannot tell you exactly when it started. There was no trauma; no blunt-force impact, no onset of injury. It was not job related; and, it has never gone completely away.

I have been diagnosed (only later to be undiagnosed by another doctor) with rheumatoid arthritis (and the regular kind), peripheral neuropathy, fibromyalgia, chronic fatigue, sciatica, muscle strain, pes planus (flat feet), ligament strain, over-exertion, and previous knee and/or hip injury.

I have been delirious and incontinent with pain. At times, it is so punishing, I cannot walk, and my legs feel weak. I then rely on a cane or crutch for support. I stopped climbing stairs. Then, I just stopped moving; and gained 100 pounds.

About 5 years ago, I got a scooter to help me be more mobile. Though the medical and outside world saw walking (or not walking) as an exercise or physical therapy issue; the scooter was a quality of life issue for me. At that point, I had none. With a scooter, I could enjoy the park, explore antique malls, take a stroll with my sweetie, etc.

Looking for a Cure

My doctors, other professionals, extended family and others encouraged me to lose weight saying I would feel better. My weight fluctuated up and down… with no discernable change in my leg pain.

They encouraged me to eat healthier; that might do the trick.

Vegetarians wanted me to stop eating meat, red meat in particular; I developed a taste for sushi and tofu. I bought non-genetically modified organic foods at the farmer’s market.

I ate only whole-grains; then stopped eating grains altogether. I reduced my fat intake, caloric intake, fluid intake. You name it… I tried it, with little or no impact on the intensity of the pain. Most people, professional or otherwise would say, “You didn’t give [insert dietary alteration/restriction here] a long enough trial.”

One woman, the leader of a pain support group, was sure that if I gave myself regular high colonics, I would feel better.

I have worn orthotics and braces without relief.

At one time or another, I was under the care of a physical therapist, sports medicine doctor, chiropractor, acupuncturist, foot reflexologist, biofeedback technician, psychologist, and psychiatrist. All were certain they could help me initially, then as they saw “cure" was not in my immediate future, they all lost interest. Every one of them said something akin to, “You have to want to be better.”

I looked for, but could not find a voodoo witchdoctor to remove my curse, but the yellow pages have no such subcategory.

I have been on Prozac, Elavil, Wellbutrin, Buspar, Paxil, Zoloft, and St. John’s Wort, at one time or another. I took Neurontin and Gabitril, neuropathic blocking agents; they didn't help. I took Valium and Flexeril to relax muscles. I have also taken Altram, Darvocet, Vicodin, Percocet, and Percodan singly, or in combination with other drugs for pain.

About six years ago, I thought I found the cure. A sleep specialist diagnosed me with sleep apnea. I woke with no pain the first night I slept through with the assistive device that ensured I would not stop breathing. It was invigorating, albeit short-lived. Within a week, the leg pain was back.

Professionals evaluate my pain on a number of pain scales including:

  • Visual Analog Scales
  • Numeric Pain Intensity Scale
  • Simple Descriptive Pain Intensity Scale
  • Graphic Rating Scale
  • Verbal Rating Scale
  • Pain Faces Scale
  • And more.

Comfort & Thanksgiving

Today is a good day. Last week I had a new procedure; an epidural steroid injection and I feel better. I do not know what it holds for the future, but the literature implies it is not a long term solution. I am hopeful and cautious at the same time.

But with this clearer head, free of narcotics, I want to say this… it is family and my friends and colleagues with disabilities who sustain me. They have not doubted my pain, or made light of it. They think I am neither dramatic nor psychosomatic. They encouraged me to know myself and my body; and when I finished looking, they were satisfied with my introspection.

Thank you.


stacey said...

i hope the pain goes away with the new treatment; i can't imagine what you must have felt like when the leg pain came back after you thought it was gone for good.

Anonymous said...

thank you for this post - i cannot relate to the type of pain you have but i am glad you have shared it. i hope the steroid injection brings you some space and some distance from it. lets us know how it goes long term.

Donimo said...

I recognize much of what you've gone through. I have had chronic pain for 27 years and boy, do I have a lot of experiences with people saying what I ought to do, should have done etc. I have quite the collection of treatments and doctors myself. It's a trying journey. I, too, am sustained by talking with others with disabilities and reading all of the great blogs out there. Our experiences are generally not reflected in the world, but online, I feel seen and understood.