Your Arguments Don’t Make Sense and I’m Still in Pain

I’ve been in a funk for the last month. Which is an extension of the funk I’ve been in for the last six months, which is an extension of the funk I’ve been in for the last few years.

I’m in pain.

This isn’t new, of course — pain started for me in my early 20s with my ulcerative colitis, increased with my diagnosis of ankylosing spondylitis in my late 20s, jumped higher still in my late 30s with the development of Crohn’s fistulas, pushed even higher in my 40s with degenerative disk disease in my neck and the spread of my AS to my shoulder joints, then reached what I thought was a complete tipping point a few years later with the development of peripheral neuropathy from my diabetes. And then I developed fibromyalgia, which although not present every day of the year, comes in several-month long waves where it takes over every. single. joint and muscle. Add that to the everyday pain I was already suffering and I thought I was going to lose my mind (spoiler alert: I’ve already lost my mind and I don’t have any more to lose).*

IMG_0583

I hear the gallop, gallop, gallop of my heart.

My pain was so bad that beyond my subjective reports of how bad it was (which, to be honest, don’t amount to a hill of beans in the medical world), that my blood pressure had gone from its previous normal of about 110/70 to about 140/100 and rising. We were starting to have conversations about blood pressure medications.

Instead I convinced my family doctor to refer me to a pain specialist and in the meantime, we switched my pain medications to a different and more powerful narcotic.

Suddenly my blood pressure was normal again.

This isn’t a coincidence. Blood pressure is a pretty standard measure of pain in hospital settings: It’s one of the reasons they take your blood pressure in the ER and then ask you if it’s different compared to your ‘normal.’ About five years ago I had pancreatitis and refused pain meds and my blood pressure started going so high that they gently but firmly insisted I accept morphine. It settled back down. My pain decreased. Until the fibro started and things got tricky again, of course, and I asked for more help.

Pain causes stress on your body. That emotional stress causes stress on your heart. This is one of the reasons why it is so important to manage pain. In spite of that, there has been a growing movement in the pain management community to turn away from narcotic painkillers in chronic pain management care.

The goal of this new movement is to focus on the quality of life of the patient and the changes which can be made to accomplish that (rather than focusing on completely extinguishing pain). These options include non-narcotic drug options (in the case of neuropathy and fibromyalgia – anti-depressants such as Cymbalta or anti-seizure medications like Lyrica), exercise, psychotherapy (cognitive behavioural therapy), group talk therapy and a variety of other techniques. The goal of the non-drug therapies is not to eliminate pain, but to learn to live with the pain.

Actual advice from my pain doctor:

NON-DRUG THERAPIES

“Stronger pain medications exist, but since they are unlikely to work, we will not give them to you.

Narcotics have the potential for abuse and have withdrawal symptoms.

“If you talk to others about your pain, at least you won’t feel alone.” But you will still feel pain.

“Physio, massage and talk therapy are temporarily helpful but some people still appreciate them.” Of course the benefits are completely defeated by the stress and pain of the ride there and ride back, and emotional stress of dealing with yet another doctor.

DRUG THERAPIES

Anti-depressants don’t work for everyone, but they might work for you so you should at least try them.

Reads black box warnings: Lyrica has the potential for abuse. Use with caution.” “Many Cymbalta users experience serious withdrawal symptoms.

“Yes it’s possible that taking Cymbalta could send you into a manic episode, but we can deal with that when it happens, and maybe give you other drugs to counteract that.” “No I can’t see you every few weeks to monitor you.”

“Yes some patients on Lyrica gain weight, but not all and it’s not that big a deal.” Except that doctors check your weight and BMI every visit, so clearly they think it is important. Zyprexa made me gain 40 lbs. I have diabetes. And joint pain that is worsened with weight gain. And I also suffer from body dysmorphia triggered by weight gain. But no big deal.

*

Doctors: You are not making sense. Get your arguments straight, stop applying double-standards that are associated more with the stigma of prescribing narcotics than they are with the actual risk (or benefit) of narcotics to the patient. You can’t use one argument against narcotics and then ignore the exact same argument when it suits you.

All you are telling me that it creates an easier standard of care for you.

/rk

*This roadmap of pain doesn’t include all the other little side trips along the way like pneumonia, asthma, costochondritis, bursitis, general fatigue of autoimmune disease, vitamin D, B12, and iron deficiencies, pernicious anemia, bipolar disorder, anxiety, OCD, major depressive episodes, schizoaffective episodes, Achilles tendonitis, brain fog, POTS, possible Sjogren’s (still waiting on that one), yadda yadda yadda.

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