8 posts from September, 2018

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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What’s the lupus/kidney connection? Our healthcare pros explain lupus nephritis and more

Posted September 24th, 2018 by

“Kidney” is one of the top terms that PatientsLikeMe members are searching for in the lupus forum (click here to join the site for forum access). Last year’s news of Selena Gomez’s kidney transplant put a spotlight on the lupus/kidney link. Lupus can affect your kidneys in a few different ways, so we asked our Health Data Integrity Team (our in-house clinical healthcare professionals) to help us learn more.

What is lupus nephritis?

Lupus nephritis is an inflammation of the kidneys caused by an autoimmune response. Lupus can cause an autoimmune attack on various parts or tissues in your body, including the kidneys. During this attack, the immune system turns on itself and tries to fight off “foreign invaders” — which are actually your body’s own healthy cells. This can trigger inflammation and swelling of the tissue in an attempt to eliminate foreign bodies.

Lupus nephritis can impair the kidneys so they’re not able to properly remove waste or control fluids in your body. Left untreated, nephritis can lead to more serious kidney disease. Cases may range from mild to severe, depending on the signs and symptoms and what areas of the kidney are involved.

Here are some symptoms of lupus nephritis:

  • Unexplained swelling in your feet, ankles, legs, fingers, arms or eyelids
  • Unexplained weight gain
  • Blood in the urine, or urine that looks foamy or frothy
  • Increased need to urinate, especially at night
  • Headache and/or dizziness
  • High blood pressure

Should you get screened?

About 50 percent of people with systemic lupus erythematosus (SLE) develop lupus nephritis, so all patients with SLE should be regularly screened for signs of nephritis. Not everyone will have the symptoms listed above, so screening tests can be helpful in diagnosis. Screenings may include:

  • A kidney biopsy — A tiny piece of tissue is removed and examined under a microscope to determine if there is any scarring or inflammation in the tissue.
  • Urine tests — An abnormal urine test may show there are cell fragments or proteins in the urine, which may signal improper filtering in the kidneys.
  • Blood tests — If the kidneys are not properly functioning, there may be excess fats and other small molecules present in the blood.

How is lupus nephritis treated?

Although lupus nephritis is a serious condition, it can be treated. The goal of treating lupus nephritis is to return normal kidney function and prevent any further kidney damage. Treatments may vary depending on the severity of the disease, but two options are:

  • Steroids such as prednisone, to help reduce the inflammation.
  • Immunosuppressive drugs (either in combination with steroids or alone). These drugs help suppress the immune system and further reduce inflammation. Immunosuppressive drugs may include cyclophosphamideazathioprine and mycophenolate. Although cyclophosphamide has some significant kidney-related side effects, it may help prevent lupus nephritis from getting worse. With proper dosing and monitoring by your healthcare provider, you can properly manage and minimize side effects.

Other lupus-related kidney issues

Other kidney disorders can occur as a result of lupus itself or as a side effect of treatment. For example, immunosuppressive drugs taken for lupus can weaken the immune system and increase your body’s susceptibility to infections, particularly urinary tract infections (UTI).

UTI symptoms may include frequent urination, pain or burning during urination, and urinary urgency. If left untreated, the bacteria from the urinary tract infection may travel up into the bladder and kidneys, causing more serious infections that may be harder to treat. If you experience any of these symptoms, let your healthcare provider know immediately in case you need antibiotics to treat the infection.

Some medications used to treat lupus may also cause signs and symptoms of kidney impairment that may be similar to signs of lupus nephritis. Each of the drugs used to treat lupus have their own set of unique side effects, most of which are manageable. If you have any specific questions regarding the risks of the medication you’re taking, ask your healthcare provider for a more detailed and individualized explanation of how your medication can affect you.

It’s important to tell your provider about any new symptoms you experience because they may point to lupus-related complications. Also, remember to consult your healthcare provider before starting any new medications or stopping your treatment.

Are you living with lupus and kidney problems? Join PatientsLikeMe or log in to connect with thousands of others who can relate.

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