TIPS and TALES About Managing Pain…

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Today I’m going to talk about pain. To be legal, I have to remind you that I am not a medical professional. NEVER stop taking a medication, add a medication or change anything in your medical regime without consulting your doctor. That includes over the counter meds.

Thank you Lisa and Laura for sharing these great tips in response to my first blog!

  1. Do your homework before a doctor’s visit
  2. Bring written questions
  3. Ask for copies of medical reports
  4. Have lists of your meds and available at appointments

I’ve experienced pain since 2001. There are times when months pass when I feel good and almost forget about TM. Sometimes several days will go by when I experience a high level of pain. I tried keeping a diary to see what triggered pain. Food? Weather? Stress? I never could figure it out.

I take pain medication, both narcotic and non-narcotic; Morphine, Lyrica and Cymbalta, and supplements for constipations.

Sometimes I think dealing with pain meds is worse than the pain. The large signs in the pharmacy window that read: “YOU NEED TO SHOW PICTURE IDENTIFICATION WHEN DROPPING OFF OR PICKING UP A NARCOTICS PRESCRIPTION”. Maybe you don’t want the woman who works at your company or just some busybody in line behind you to know you take narcotics.

Recently Walgreens Corporation has changed their policy. A narcotic prescription signed by your doc is not enough. Forget that you have gone there for the last 11 years and picked up the same one. They now have to call the doc’s office to verify the Rx. You better not show up Friday afternoon or you may be out of luck!

One of my friends, who is a criminal defense lawyer, told me that Walgreens has changed policy due to the increase in fraud cases involving narcotic pain meds. I get that, but WE ARE NOT THE CRIMINALS. We have a disease. Making it harder to get my meds adds another layer of stress. Because I need a pain med not a heart pill or antibiotic, why should I be treated like I’ve done something wrong?

Worse than the pharmacy are the pain docs. In 2009, I decided I wanted to try a lower taking a lower dose of medication. My treating physician told me he wasn’t an expert in that area and gave me a referral.

My first pain doc appt: Before I met him, I saw his assistant. Without much discussion he had me sign a narcotic contract, pee in a bottle and listen to a lecture about what would happen if I lied, cheated, etc. No kudos for attempting to lessen my dose. I then met the doc who was about 6’3” at least 250 pounds. (I’m 5’2”) Again without much discussion, he gave an Rx for a dose of morphine that was 25% lower.

When I went back two weeks later, I was still feeling shaky. He said I should go down another 20%. I wasn’t ready. I wanted to stay on the first lowered dose somewhat longer. His response – “I could refuse to give you any Rx at all.” I was a judge at the time and able to speak for myself. I felt like a kid at school who had broken the rules. He also said he had once taken narcotics and went off cold turkey. I found his demeanor menacing perhaps partially due to his size. I asked him if he was threatening me and he got angry. Luckily, my husband was there because after the tears came rage. Without him to calm me down, I might have been left without meds or been arrested for disorderly conduct or assault. We parted company.

My second pain doc appt: Started much better. I met him first and he even had worked with TM patients. I hardly saw him again. I met with nurse practitioners who changed almost monthly. We went through the narcotics contract; I peed in the jar, and was cautioned about lying, etc. The first couple months were okay. I slowly went down on my meds! Then a new nurse practitioner began our third session by yelling at me for missing an appt. (I hadn’t) and for lying about my meds (I hadn’t). When he finally realized I had neither missed an appt. nor lied, he never apologized. I never felt we established any rapport because of his failure to apologize and his accusatory manner. I continued there for a few months doing well! One month, I had pain almost daily and requested to go up 10 mg for a month and see how it went. He said no. We argued. I asked him for suggestions to deal with the pain in another way. He gave me none. End of Doc Two and pain docs for me!!

Luckily, I knew a doc at the VA who worked with veterans detoxing them from drugs, and while he couldn’t treat me, he agreed to advise me. I went back to my doctor and he agreed to help me using the other doc’s advice. I’m happy to say I went down about 60% where I remain today. I still hope someday to get off totally.

I could go on but I know you get the point. I know there are wonderful, compassionate medical professionals out there. My primary care doc and neurologist couldn’t be better. But there are also ones who for whatever reason, burnout perhaps, treat us badly. And some of us because of geography or medical plans have few choices.

No more tales…..on to tips for today.

  1. Don’t throw narcotic drug bottles away until you take the labels off. Burglars check trash.
  2. To avoid getting stuck without meds or having to go home to get them, keep a few extras in your car or office.
  3. Try not to fill your Rx on Friday. If you have to, the earlier in the week the better.
  4. Read the Rx before you leave the doctor’s office to make sure it has the right dosage, right amount of pills, that it is signed by the doc and has his DEA #.
  5. If you are going out of state and need to fill a narcotics Rx while you are there, make sure the state you are going to will fill it. On vacation in California, I found out California would not fill my Rx because it was from out-of-state.

Have any of your own tips and tales to share?  Email me at [email protected]

BarbaraMs. Barbara Sattler is on the Board of the Transverse Myelitis Association.  While a city court magistrate in Tucson, Arizona, Barbara contracted Transverse Myelitis. She took four months to recover before returning to work and was later appointed to the superior court bench. Barbara retired in 2008. Since retirement she has written a novel and has committed the publication’s proceeds to SRNA. She is currently working on her second novel.