Chronic Pain: Might People on Dialysis Benefit from Dr. Francomano's 5% Strategy?

This blog post was made by Dori Schatell, MS, Executive Director, Medical Education Institute on January 6, 2022.
Chronic Pain: Might People on Dialysis Benefit from Dr. Francomano's 5% Strategy?

Dozens of years ago as an undergrad at the University of Wisconsin—Madison, I worked part-time as a student aid for Dr. Leonard Berkowitz in the psychology department, a lovely, kind man who was internationally famous for his work in altruism and aggression. He had me Xerox and file journal articles, run punch cards (!) to the basement computing center for statistical analyses, and, most fascinating and heartbreaking, transcribe audiotapes of interviews with people who suffered from chronic pain. I was, at the time, an appalling typist, but a careful listener, and never forgot those harrowing tales of pain that just never stopped.

The global challenge to pain management has not changed since the 1970s when I worked for Dr. Berkowitz: we do not have an “objective” way to measure someone else's pain. When my late mother-in-law did rehabilitation after a fall, the physical therapist asked what her pain level was, on a scale from 0-10. “Eleven!” she replied. But, since it was eased by a Tylenol, this is unlikely. It is a challenge as a patient to say where pain is on that scale—one person's 4 is another person's 8, for example. And, in today's current anti-opioid backlash, there is a tendency to dismiss pain as imaginary, which can risk people's lives.

Nothing learned is ever wasted, though. When my younger daughter (an illustrator and artist who develops original images for MEI) developed trigger finger in both hands at the same time a few years ago, we went down a rabbit hole that ended up leading to a diagnosis of the genetic collagen disorder hypermobile Ehlers-Danlos Syndrome (hEDS). Made by connective tissue cells, collagen forms ¾ of our skin, lubricates our joints, and holds our bones together. If collagen is “glue,” hers is Post-it notes. Her tendons and ligaments stretch. Hypermobile EDS can cause many types of pain—bone, joint, nerve, muscle, tendon, GI, headaches… Our goal became to help her to be as functional as she could be with as little pain as possible.

Since MEI started the Home Dialysis Central Facebook discussion group in 2012, I knew to look for online support for hEDS. We found it—and learned something brilliant that I have not yet seen applied outside of Ehlers-Danlos. Dr. Clair Francomano, an eminently qualified EDS researcher and expert, is credited with the approach of layering pain strategies:

“Dr. Francomano describes her 5% Plan for Pain Relief. Take, for instance that your medications take care of 20% of your pain relief,” explains a forum post. “Then you use your TENS unit for another 10% reduction. Some Tiger Balm on your painful joints brings another 5% of pain relief. Maybe you could pull out your heating pad too for another 5% of pain relief. Then you decide upon a warm soak with Epsom Salts for another 10% pain relief. Deep breathing and some PT exercises combine for another 10% of relief. And, then you watch a great movie for another 15% of pain relief. So, now you have 75% of your pain managed effectively. How could your days be different if 75% of your pain was gone?”

Pain is common in chronic kidney disease. More than 60% of people report pain even before their kidneys fail.1,2 This pain can be in muscles, bones and joints, nerves. Polycystic kidney disease causes painful cysts in the kidneys (and possibly the liver.) Lupus flares can cause pain in the muscles, joints, and bones. Mineral imbalances cause bone pain. Diabetes can lead to neuropathy. And, of course, having CKD is no armor against other causes of pain—such as Shingles. Pain can make it hard to fall or stay asleep, and poor sleep can worsen pain.

Dragon, Fire, Flame, Banner, Fantasy, Monster, Design

Medications can be a start, but they are not the only—or necessarily even the best—way to manage chronic pain.3 Some of the other options you might be able to “layer” are:

  • Ice for 15 minutes at a time (with a thin towel to protect skin).

  • Heat for 15 minutes at a time with a heating pad for muscle pain. Or, a hot bath.* Switch between ice and heat for more impact. *Add Epsom salts, with a nephrologist's okay.

  • Topical pain creams or patches to put medicine just where you need it. These creams can contain numbing ingredients, like lidocaine or diclofenac (check with a nephrologist before use), cooling ingredients like menthol, or heating ingredients, like capsaicin.

  • Different shoe heel heights to reduce knee and/or hip pain.

  • Aromatherapy, such as smelling lavender essential oil on a cotton ball, to help relax you.

  • Music to ease pain and anxiety.

  • Vitamin D if your levels are low and your doctor advises it. A new study in people with diabetic nerve pain found that people who were randomized to get 5,000 IU of vitamin D per day with their other pain control had significantly less pain and burning.4

  • Glucosamine or turmeric (for painful joints), or alpha lipoic acid supplements (for nerve pain)—with your doctor's okay.

  • Acupuncture to relieve low back pain. Medicare covers acupuncture for this condition.5

  • A warm paraffin bath can soothe hand pain. An old crockpot works well for this.

  • Some find that going gluten-free makes joint pain fade away.

  • Some find that cannabis helps their pain. Know that some transplant programs will not list those who use it.

  • Compression clothing, braces, or KT tape can help support your body.

  • Movement therapy like yoga, Pilates, Tai Chi, or Chi Gung help many people with pain.

  • Meditation and mindfulness can help pain to interfere less with your life.

  • Hypnosis can help pain control, and you can learn to do it yourself.

  • Physical therapy can make a bigger difference than you think. Medicare no longer limits the number of PT sessions for necessary outpatient services.6

  • Cognitive behavioral therapy (CBT) aims to help you cope better with pain.

Intractable pain—reported as a 9 or 10 on the pain scale—may be best handled by an interdisiplinary team that is trained in pain management and/or palliative care. These approaches do use multiple ways to reduce pain and can give hope to those who are suffering.

  1. Davison SN, Rathwell S, Ghosh S, George C, Pfister T, Dennett L. The prevalence and severity of chronic pain in adults with chronic kidney disease: a systematic review and meta-analysis. Can J Kidney Health Dis. 2021 Feb 19;8:1-22↩︎

  2. Lambourg E, Colvin L, Guthrie G, Murugan K, Lim M, Walker H, Boon G, Bell S. The prevalence of pain among patients with chronic kidney disease using systematic review and meta-analysis. Kidney Int. 2021 Sep;100(3):636-649↩︎

  3. Brintz CE, Cheatle MD, Dember LM, Heapy AA, Jhamb M, Shallcross AJ, Steel JL, Kimmel PL, Cukor D, on behalf of the HOPE Consortium. Nonpharmacologic treatments for opioid reduction in patients with advanced chronic kidney disease. Sem Dial. 2021 Jan;41(1):68-81↩︎

  4. Pinzon RT, Wijaya VO, Veronica V. The benefits of add-on therapy of vitamin D 5000 IU to the vitamin D levels and symptoms in diabetic neuropathy patients: a randomized clinical trial. J Pain Res. 2021 Dec 19;14:3865-3875↩︎

  5. Acupuncture. https://www.medicare.gov/coverage/acupuncture. Visited Jan 3, 2022↩︎

  6. Physical Therapy. https://www.medicare.gov/coverage/physical-therapy. Visited Jan 3, 2022↩︎

Comments

  • Nieltje Gedney

    Jan 11, 2023 4:10 PM

    Dori, I am so glad to see all the alternative solutions you mentioned. I, for one, HATE pain meds, and rarely take them (like 1 a year if that). The meds mask the pain, but make me feel so much worse that it isn't even worth it. At your recommendation, I found a magnesium cream and use that for cramps and RLS. Works pretty good. I am lucky in that I either don't feel pain a lot, or actually don't have any - not sure which LOL. So when I do feel pain, I know something serious is wrong and address it ASAP. For those of us with CKD and or on dialysis, drugs like gabapentin and oxy should be a last, last resort, if at all, and yet docs are still prescribing them for daily use. The long term side effects are so much worse than most pain.
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    • Dori Schatell

      Jan 11, 2023 5:02 PM

      Nieltje, right?! I developed extensor tendonitis in one foot after a long day of hiking last summer, and nothing seemed to help it--not Aleve or diclofenac (Voltaren), or magnesium, or ice, or any of the things I usually try. When it was really bad, I was limping! After a few month wait, I saw a podiatrist, had an MRI (nothing there), and she suggested a boot. Um, no. I have EDS, and that would have messed up my knee and hip. But, this fall/winter I realized that it didn't hurt when I wore cowboy boots. So, I tried a pair of real hiking boots (with a higher heel). Magic! The problem seems to be solved! I still need to message the podiatrist and tell her.
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  • Yvonne Coleman

    Jan 11, 2023 2:33 PM

    Great article Dori. As someone else mentioned, full of useful information. Thanks for writing this, and sharing it. I have plenty of family and loved ones who suffer with pain, often told to “take a pill you will be fine.” Then sent home to suffer or become addicted to pain pills. So I hope you don’t mind if I share your blog
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    • Dori Schatell

      Jan 11, 2023 3:27 PM

      Yvonne, PLEASE share the blog--that's what it's for! :-)
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  • Dori Schatell

    Jan 11, 2022 3:30 PM

    Oops, forgot to include magnesium cream or lotion for tendonitis. It really helps!
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  • Lissette Ramos-Multani

    Jan 08, 2022 1:13 AM

    Great blog Dori and something that definitely needs to be addressed. Having gone through my own pain struggles with one doctor who over medicated me to others who considered me a pill seeker, until I talked about my frustration and my physical deterioration because of pain from lupus, neuropathy and dialysis. I’m now basically weak as a newborn because I’ve been sitting still for ten years, afraid to move or do anything because of pain. They’re trying to send me to PT but still won’t address my pain!
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    • Dori Schatell

      Jan 11, 2023 5:03 PM

      Liz, PT can help pain, though. It's my daughter's BEST strategy.
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    • Nieltje Gedney

      Jan 11, 2023 4:03 PM

      Liz, see if you can find a PT center that offers aquatic therapy. This is one of the best ways to gain strength without additional pain. Exercise in warm water is soooo soothing.
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    • Dori Schatell

      Jan 09, 2022 4:22 PM

      Lissette, PT can be one of the BEST ways to address chronic pain. Of all of the strategies my daughter uses, PT is the one that has helped her the most. Learning different ways to move safely and build up strength could make a big difference for you.
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  • Mary Beth Callahan

    Jan 07, 2022 10:24 PM

    A great blog! Loaded with relevant and helpful information. Thank you.
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  • Beth Witten

    Jan 07, 2022 5:58 PM

    In the 1990s I was asked to speak on rehabilitation at a meeting of the ESRD Network of New England. I heard a presentation by Dr. Klemens Meyer, a nephrologist at Tufts Medical Center in Boston. This was the first time I'd heard anyone talk about measuring health-related quality of life (HRQOL). He said how surprised he was to learn how many of his patients reported on the survey that they had pain. These were patients who had never mentioned pain to him before. They apparently didn't realize that they should report to their nephrologist all symptoms, even those they didn't believe were related to kidney disease or dialysis. He said that when the survey identified the presence of pain and he treated that pain, he saw improvement in HRQOL when he surveyed those same patients again. U.S. dialysis clinics are supposed to assess patients' HRQOL. How much pain someone has is subjective. The KDQOL that measures HRQOL asks "During the past 4 weeks, how much did pain interfere with your normal work (including both work outside the home and housework?" It provides a 5-point scale from "Not at all," "A little bit," "Moderately," "Quite a bit," and "Extremely." As Dr. Meyer found, treating pain can significantly affect how someone perceives his/her quality of life to be. Low scores on HRQOL predict hospitalization and death. If you're on dialysis and you're asked to complete this survey, please complete it. It could save your life and improve your quality of life.
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  • Josafat Eleazar Camacho

    Jan 07, 2022 4:09 PM

    Buenas recomendaciones.
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    • Dori Schatell

      Jan 07, 2022 5:18 PM

      Gracias!
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