"Am I crazy? I am going nuts with symptom X," the kidney patient may often cry. While (s)he may indeed be going insane, there are known causes of some of the distressing symptoms that eventually affect many kidney patients. Worsening problems associated with diabetes, with acute or chronic renal failure, or with long-term dialysis include: anorexia; "burning feet"; daytime drowsiness and insomnia with a tendency to sleep inversion, sleep apnea and other sleep disorders; dementia dialytica; dialysis dysequilibrium syndrome; itching; peripheral neuropathy; perversion and weakening of the senses of taste and smell; pica; "restless legs"; and others. For an extensive, highly technical review of some of these afflictions see: Nervous System Manifestations of Renal Failure by CL Fraser and AI Arieff, Chapter 93 in RW Schrier, CW Gottschalk (Eds), Diseases of the Kidney, 6th ed, Little, Brown & Co., Boston, pages 2625-2646, 1997. NLM Call No. WJ 300 D611 1996, ISBN 0-316-77456-1.
Here follow four sections of mostly patient-oriented resources I have found for, respectively, peripheral neuropathy, pica, restless legs syndrome, and sleep disorders. I welcome your comments.
The Neuropathy Association PO Box 2055 Lenox Hill Station New York, NY 10021 800-247-6968, info@neuropathy.org
Peripheral Neuropathies message board on America Online Keyword aol://5863:126/mB:107479
pica (pie' kuh) noun: An abnormal craving or appetite for nonfood substances, such as dirt, paint, or clay. [New Latin pica, from Latin, magpie (from its omnivorous nature).] Adapted from The American Heritage Dictionary of the English Language, Third Edition, copyright 1992 by Houghton Mifflin Company.
As will be seen in citations below, pica is usually blamed on deficiencies of iron or unknown other nutrients or minerals, on culture or environment, or on mental illness. Despite fluid overload and expensive damage to my teeth, ever since starting dialysis in 1981 I have compulsively chewed ice. Oh, it is good! Better than steak! While feeling new empathy with those afflicted by (those awful other) obsessive-compulsive disorders, I cannot help that my ice-munching annoys my wife and many others within ear-shot! Even while various perversions of taste and smell that I experienced were effectively treated by non-prescription zinc sulfate, and while I have received extensive iron supplementation and some EPO and have long had an hematocrit in the mid-30s, I STILL GOTTA HAVE THAT ICE! as also do many of my fellow dialysis patients.
Are we nuts? Do we instead have some particular needs for supplementation with things beside the usual folate, pyridoxine, zinc, carnitine, iron, erythropoietin, biotin, insulin, dihydroxycholecalciferol, etc. ad nauseum ? I have seen widespread eating ice (pagophagia) in U.S., Canadian and European dialysis units. I have heard about but not seen dialysis patients' pica for laundry starch (amylophagia) and clay (geophagia). If there is sufficient interest, eventually I would like to poll numerous dialysis patients about pica for various substances.
Clear, cold orb that rules my glass; With so many types, it's hard to pass. Small, soft cubes with dimples are divine; When slightly melted, crunch inside my mouth quite fine!
And ice machines! Heaven! Sample I must If I don't stop with one cup, surely I'll bust! Nothing has ever tasted quite as sweet As a mouthful of frozen water against my teeth!
My dentist has scolded and my doctor frowns; Yet I continue devouring the frigid crowns. Round ones and square ones Chipped, crushed and frappéed ones!
Time-honored friends, I hope you relate; This longing for ice cubes just will not abate. So onward I trek in search of perfection, Longing for frozen (and melting) confections.
NORD - Pica: gives a bunch of mental health references.
Pica blamed on iron deficiency.
Pica: An Overview, article by RB Sayeth in the American Family Physician, volume 33 number 5, pages 181-185, 1986.
Pica: ESRD Patients and the Incredible Inedibles, article by Linda Lackney Broda MS RD LD, pages 18, 19 and 34 of the April 1993 issue of CONTEMPORARY DIALYSIS & NEPHROLOGY magazine 6324 Variel Ave., #308 Woodland Hills, CA 91367 818-704-5555, fax 818-704-6500
Pica in Renal Patients, article by S Ojanen MD, H Oksa MD, and A Pasternack MD, in Dialysis and Transplantation (818-782-7328, fax 818-782-7450) volume 19 number 8, pages 429-433, August 1990.
thrive@health - PICA: pica blamed variously on nutritional deficiencies, disadvantaged cultures and environments, and mental illness.
RLS is a maddening feeling of itching, crawling, painful leg-bones that may occur with chronic renal failure, and that frequently afflicts dialysis patients.
Cyberspace RLS Support Group: This unmoderated mailing list is a labor of love by David Shaler, an RLS sufferer. Join by emailing message "subscribe."
Restless Legs Syndrome: A Review Archives of Internal Medicine 156(3), 243-248, Feb. 12, 1996. The complete text of Archives, as of all American Medical Association journals, is available on-line on Dialog and on Information Access Company.
RLS Support Site Debra Pfanschmidt, National Support Coordinator Restless Legs Syndrome Foundation 4410 19th Street NW, Suite 201 Rochester, MN 55901-6624 The RLS Foundation offers the Night Walker newsletter by subscription. To form support groups write to Ms Pfanschmidt, or email Kirkland Reitz. For a free brochure about RLS and the Foundation, send a stamped self-addressed envelope.
Sleep Thief, Restless Legs Syndrome, book by V. N. Wilson and A. Walters, 1996, available in softcover (ISBN 0-965262-0-9) or hardback (ISBN 0-965262-1-7) from the publisher: Galaxy Books, Inc. P.O. Box 1421 Orange Park, FL 32067 904-264-0957
Sleep Apnea Message Board On America Online, select Keyword PEN. Select Lung and Respiratory Disorders Forum. Select Message Boards, click one of 48 topics, including sleep apnea.
Sleep Disorders on America Online Keyword: Sleep Disorders.
Sleep Information from the (U.S.) National Heart, Lung and Blood Institute
SleepNet: Everything you wanted to know about sleep disorders but were too tired to ask.