5 posts tagged “pain management”

Lung Cancer Surgery Recovery – 5 Recovery Tips from Patients

Posted October 10th, 2018 by

PatientsLikeMe members have talked in the forums about what it’s like to recover from lung cancer surgery – and what most doctors don’t tell you. We’ve gathered some helpful post-surgery hints members have shared. (Hint: Join PatientsLikeMe for access to the Lung Cancer Forum.)

lung cancer surgery recovery 1

Many members have mentioned that the side effects of a lobectomy or other lung surgery can be more intense than they expected. “I had a right upper lobectomy 2 years ago – still have lots of pain and numbness – bras suck!” one member says.

“The surgeon wasn’t very informative and my doctor, bless his heart, hasn’t ever had a patient like me so doesn’t really know what’s normal and what’s not,” says another member. “I’m very thankful for this site, I have learned a lot from it.”

What can help?

  • Finding the right bra. Wear a looser sports bra, an old bra (without underwire) or a stretchy camisole with soft cups, to give some breast support but nothing too restrictive.
  • Setting yourself up for sleep. Stomach sleepers will need to get used to sleeping on their back or (maybe) side. Sleeping in a recliner, or using pillows or foam wedges to find a decent position in bed, can help you catch some Zzzs.
  • Treating your incision with care. Cold or rainy weather, and even chilly air-conditioning, can make scars extra sensitive, so try to stay warm and dry. One member advises applying vitamin E and unscented skin cream to help with healing.
  • Managing your pain. Members report using prescribed pain meds, Lidocaine patches, pain-relief ointment (like Icy Hot) and heating pads to deal with some of the pain.
  • Taking it easy. Go “very slow in the beginning,” says one member. “Resting on your back a lot, taking short and slow walks, not twisting the body, not carrying (heavy) things, not running, taking the stairs slowly… With these things, I was OK eight months after my operation. But I’m still very careful…”

Another word to the wise? Ask your doctor right away about any symptoms you’re not sure are normal, such as breathing issues, coughing or bleeding.

On PatientsLikeMe, more than 50 people have reported having surgery as part of their lung cancer treatmentLung lobectomy is the most commonly reported type of surgery, followed by pneumonectomy and lung wedge resection (click on these links to see treatment reports — logged-in members have access to more information).

Also, check out our recent write-up on some newer and less invasive procedures for lung cancer.

Have you had lung cancer surgery or will you be undergoing this procedure soon? Join our patient community or log in to see what else members have shared about recovering from lung cancer surgery.

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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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