5 posts tagged “doctor patient relationship”

The Pain Scale 1 to 10 falls short

Posted September 28th, 2018 by

As Pain Awareness Month (September) comes to a close, we’re exploring how pain is subjective, and expressing it using the classic 1-to-10 or “smiley face” scale can be tricky. What are the shortcomings of these scales? And what can help you communicate better with your doctor?

Pain Scale 1 10 falls short

Pain scale problems

NPR recently reported about the trouble with the most common pain scales:

  • Numbered scales – A zero-to-10 or 1-to-10 scale may leave patients scratching their head – what if I’m a “4″ right now but was a “7″ when I first called the doctor? Is my “5″ the same as someone else’s and could it lead to over- or under-treatment? (Note: Clinicians only consider scores over 7 to be severe; 4 to 7=moderate; and 1 to 3=mild.)
  • Face scales – The well-known Wong-Baker FACES pain rating scale was originally created for children, but it’s still widely used for all ages. Not everyone can equate their pain level to certain emotions or facial expressions. For example, some people with autism or chronic severe pain may not understand which face to choose – if I’m not crying, is my pain not severe?

Adam Rosette, a 33-year-old who had surgery to remove multiple benign brain tumors, tells NPR he wonders if he “low-balled” his pain while in the hospital. “I don’t think I ever answered higher than a ‘7’ because an ‘8’ would be, in my mind, like I’m missing half of my body or a limb,” he says.

In the PatientsLikeMe Chronic Pain forum (psst, join our community for link access), members have talked about the challenges of discussing pain with their doctors. Some say that pain management is a tough topic these days because of fears surrounding pain medication dependency and the opioid crisis.

5 pointers for conveying pain

U.S. experts in pain management are working on new ways to assess pain levels more accurately. Some researchers are even developing devices to measure pain more objectively.

Meanwhile, NPR rounded up a few ideas for communicating with your care team about pain. Here are some of their tips, plus a few others:

  • Get “a little more flowery,” pain management specialist Dr. Chrystina Jeter says. It’s OK to go beyond a pain scale rating and describe your pain as aching or burning, or to compare it to the worst pain you’ve ever felt, such as kidney stones, childbirth or a surgical wound.
  • Portray your day – explain which times of day or activities are most difficult for you, and get specific about how pain has impacted your ability to function (for example, ‘I can no longer chew, run, walk, get out of bed, etc.’). Hint: Tracking how you’re feeling every day on PatientsLikeMe can help you remember the details at your next doctor appointment.
  • Go into your history, including how long you’ve lived with this pain, what other treatments you’ve tried or considered, and even your family history of pain sensitivity (which is inherited, pain specialist Dr. William Maixner points out).
  • Explore other pain scales – because there are actually several different ones (some more serious than others). Look into how others with your particular condition explain their pain, such as this pain scale by a blogger with lupus (it’s a little tongue-in-cheek but no laughing matter). Which brings us to…
  • Discuss your suffering. “Even if a perfect scale could be designed, it isn’t clear that it could ever overcome the obstacles that prevent us from explaining our pain,” says one Medium writer with chronic pain. “Ultimately, it isn’t really about pain — though that is the root. The problem is suffering. All of the personal, cultural and biological factors that make us unique make it almost impossible to convey our inner experiences with other people.”

Beyond talking about your physical function, tell your doctor and care team about the mental toll your pain or symptoms are causing. Again, be specific – “physically, my pain has been a ‘5’ for so long that, emotionally, I’m at a ‘9.’” (There are separate assessments for mental health, of course – just don’t assume your doctor instinctively knows about your mental anguish when you talk about your physical pain.)

How do you convey pain to your doctor or care team? Join PatientsLikeMe or log in to connect with other members on this topic in our forum.

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“Breaking up” with a doctor after 14 years — Bernadette’s journey to better care

Posted August 30th, 2018 by

PatientsLikeMe member Bernadette (yellsea), who’s on the 2018 Team of Advisors, has been living with Parkinson’s disease (PD) since 2002. She recently filled us in about switching specialists after more than a decade with the same neurologist, and advocating for herself after enough “red flags” popped up in her interactions with that physician.

Out with the old

Bernadette lives in remote area in the Great Lakes Region of New York. The first PD symptom she noticed was her handwriting getting small (a common early symptom of PD known as micrographia) — and her first doctor dismissed it as “writer’s cramp.”

When she began having tremors in her hand, she started seeing a neurologist with a strong reputation in Syracuse, about a 40 minute drive from her home.

“He’s very well-respected in the area,” she says. “In fact, a lot of the [other] doctors won’t step on his toes.”

Bernadette was experiencing serious side effects with some of her PD medications — including compulsive gambling out of the blue (a reported side effect of Mirapex) — but her neurologist asked her very few questions about how she was feeling, and never raised the topic of side effects.

“My husband didn’t like him,” Bernadette says of her old doctor. “I didn’t know any better. There were cues I should’ve picked up on long before the 14 years.”

Bernadette got a taste of other Parkinson’s care when she enrolled in PD telemedicine trials at the University of Rochester (U of R), where the staff is “amazing,” she says.

Bernadette says she was experiencing terrible dyskinesia, and a U of R neurologist mentioned that one of her treatments might be a factor (but didn’t suggest altering her treatment without consulting her doc).

She stopped taking the medication without telling her usual neurologist in advance. (“That was my one mistake,” she notes.) But she noticed a major drop in dyskinesia.

“When I told him I didn’t take [the drug] anymore — and why I didn’t take it anymore —he came unglued,” Bernadette says. “Nobody intimidates this little girl, but I was almost in tears.”

In with the new

Fortunately, Bernadette’s husband, Mark, attends doctor’s appointments with her and calmly stepped in when the doctor flipped out.

“Mark said, ‘You’re not going back there,’ and I said, ‘No, I gotta find another doctor,” she says.

After about a month, she landed a new neurologist at U of R. Although Rochester is about an hour and 15 minutes away, the change has been well worth it and the transition was “seamless” in terms of paperwork and insurance, Bernadette says. (Other patients aren’t always so fortunate, when it comes to insurance coverage — see one example here.)

Her new physician is a younger doctor who’s a movement disorder specialist (focused on PD), rather than a general neurologist (treating a wide range of neurological disorders).

“I was leery” at first, Bernadette says. “She wasn’t that old. She wasn’t out of school that long. My husband said, ‘No—take her! She’s young! She’s got fresh ideas!’ I never looked at it that way.”

These days, Bernadette’s doctor visits are pleasant from start to finish, she says, because the entire office staff is friendly and she has more of a dialogue with her doctor. She isn’t afraid to ask questions or discuss her symptoms and side effects.

“She knows what questions to ask someone with Parkinson’s,” Bernadette says of her new doc. “I tell everyone [with PD] that they need to go to a motion specialist.”

Bernadette continues to stay on top of PD research by reading books and articles (which she advises all patients to do), and no longer feels intimidated about raising new ideas, whether in-person or over the online patient portal (something her old doctor didn’t offer).

“I tell people, you have to do it yourself — you have to be an advocate for yourself,” Bernadette says.

Not every doctor and patient will click, she says, especially with such a varied disease as PD (sometimes called a “snowflake disease” because it can affect people so differently).

“You gotta go with your gut. I might like German shepherds and you might like chihuahuas — and there’s nothing wrong with that,” she says. “It’s a personal thing.”

Bernadette — an upbeat jokester — likes how her new doctor can roll with her sense of humor, but also knows when to take her seriously.

“I can be me,” she says.

How’s your relationship with your doctor? Have you ever noticed “red flags” in your care or had to change doctors? Join PatientsLikeMe today to jump into this conversation in the forum. Also, check out our Good Care Checklist, which PatientsLikeMe developed based on recent research with the Robert Wood Johnson Foundation on “good health care” from the patient perspective.

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