Patient Pain Resources

HIGHLIGHTED ARTICLES/PODCASTS

Interview with Cathy Glaser, very committed founder of the Migraine Research Foundation, and Joel Saper, of the Michigan Head Pain and Neurological Institute. On Women’s Day radio, August 19, 2009.Rare discussion of chronic daily headache, which Glaser’s daughter suffers from. Also raises awareness about childhood migraine/CDH, related symptoms (such as stomach pain and neck pain), and biological roots.

New concept of seeing headache as chronic, not just episodic (something you can control by just avoiding triggers). Explored in January 2008 issue of the Lancet (neurology journal).

“On Pain’s Trail,” from LA Times, August 22, 2005. Unusually helpful and insightful article about central sensitization and its connection to many pain and fatigue problems, that are mainly experienced by women. This includes chronic headache, endometriosis, and fibromyalgia.

WEBSITES WITH PATIENT DIALOGUES:
http://www.headaches.about.com

http://www.migrainepage.com

http://www.chronicbabe.com

International: (available in French, Spanish, German & Portugese): http://membres.lycos.fr/migraineheadache/

NEW: The Daily Headache Blog by Kerrie Smyres of Seattle and a creative New York mom’s migraine blog

NONPROFIT ORGANIZATIONS

FOR GRACE
Dedicated completely to raising pubic awareness of women’s medical undertreatment of chronic pain. Founded by Cynthia Toussaint, a former ballerina who suffers from RSD. Holds conferences and lobbying sessions. Offers updated articles on women and pain: http://www.forgrace.org/women/in/pain/C12/

AMERICAN COUNCIL ON HEADACHE EDUCATION (ACHE):
Also offers newsletter, Headache, with latest medical information. Support group and doctor referral.
http://www.achenet.org

NATIONAL HEADACHE FOUNDATION:
Also offers newsletter, Head Lines, with latest medical information.
Support group referral.
http://www.headaches.org

MAGNUM: The National Migraine Association (Migraine Understanding Group:
A National Understanding for Migraineurs)
http://www.migraines.org/

AMERICAN CHRONIC PAIN ASSOCIATION:
Support group referral.
http://www.theacpa.org

AMERICAN PAIN FOUNDATION
Also offers electronic and paper newsletters, among many other patient resources.
http://www.painfoundation.org

MIGRAINE ACTION ASSOCIATION (Great Britain)
http://www.migraine.org.uk/

WORLD HEADACHE ALLIANCE
http://www.w-h-a.org

INFORMEDHEALTHONLINE.ORG
A clearinghouse of unbiased (not funded by a drug company) information evaluating studies in both alternative and Western medicine, from Australia.
http://www.informedhealthonline.org

MEDICAL JOURNALS & RESOURCES (articles have clear summaries in the beginnings)

The ultimate source for the latest medical research, compiled by Dr. Lawrence Robbins of Northbrook, IL
www.headachedrugs.com

Headache: The Journal of Head and Face Pain (published on behalf of American Headache Society)
http://www.ahsnet.org/journal/

Current Pain and Headache Reports
http://www.current-reports.com/home_journal.cfm?JournalID=PA

Cephalalgia (published on behalf of the International Headache Society)
http://www.blackwellpublishing.com/journal.asp?ref=0333-1024

For latest diagnostic classifications of headaches, see the web page of International Headache Society:
http://www.I-h-s.org

BOOKS ON PAIN:

FOR COPING WITH CHRONIC PAIN (MENTALLY AND EMOTIONALLY)
From the American Chronic Pain Association

http://theacpa.org

From Patient to Person: First Steps, by Penney Cowan (workbook). The videotape version is also recommended.

  • Pathways Through Pain series (videotapes). The first one, Accepting the Pain, is especially recommended.
  • Register, Cheri. The Chronic Illness Experience. Originally titled Living with Chronic Illness: Days of Patience and Passion. New York: Free Press, 1987. Center City, Minn.: Hazelden, 1999.

Nielsen, Patricia D. Living With It Daily: Meditations for People With Chronic Pain. New York: Dell, 1994.

Cleveland, Martha. Chronic Illness and the Twelve Steps: A Practical Approach to Spiritual Resilience. Center City, Minn.: Hazelden, 1988.

(on meditation) Kabat-Zinn, Jon. Full Catastrophe Living. New York: Delta, 1990.

Chronicbabe.com, a resource for the “young, hip and chronic.” A new generation’s approach to living as fully as possible with illness.

Butyoudon’tlooksick.com, by a lupus sufferer
FOR COPING WITH HEAD PAIN (PHYSICALLY)

Robbins, Lawrence and Susan S. Lang. Headache Help: A Complete Guide to Understanding Headaches and the Medicines that Relieve Them. New York: Houghton Mifflin, 1995.

Tepper, Stewart J. Understanding Migraine and other Headaches. Jackson: University Press of Mississippi, 2004

Young, William B. and Stephen D. Silberstein. Migraine and Other Headaches. New York: Demos Medical Publishing, 2004.

FIRST-PERSON ACCOUNTS

MEMOIRS:

(chronic daily headache) Reese, Hazel Lucretia. I Will Not Complain! My Life with Chronic Illness. Baltimore: Publish America, 2004.

(chronic pain) Heshusius, Lous. Inside Chronic Pain: An Intimate and Critical Account (The Culture and Politics of Health Care Work) (Hardcover): Cornell University Press, October 2009.
(trigeminal neuralgia) Levy, Carol Jay. A Pained Life: A Chronic Pain Journey. Xlibris, 2003.

Hatak, Kristine. A Guided Tour of Hell: Migraine in the Words of its Victims. Roseville, CA: Dry Bones Press, Inc., 1999.

ESSAYS:

Bernardi, Andria. “Half-Cranium,” River Oak Review (Oak Park, Ill.), spring/summer 2003, 67-75

Didion, Joan. “In Bed”; Reprinted in The White Album, by Joan Didion. New York: Pocket Books, 1979.

Harden, Holly. 2003. “The Fish That Swim in My Head: A Life with Migraine Headaches” Utne Reader, Sept-October 2003, 45-47. Originally published in Fourth Genre.
Cahn, Susan K. “Come Out, Come Out Whatever You’ve Got! Or, Still Crazy after all these Years,” Feminist Studies 29, no. 1: (spring 2003): p. 7, 12 pages.
(chronic fatigue syndrome)

Chronic migraine patient and writer Mary Gustafson’s adventures:

pearIndiana Artist Christa Barnell, who has conveyed her experiences with chronic headache through vivid paintings

Feminist activist/pioneer and CDFIDs patient Naomi Weisstein’s account of survival in a hospital.

Stacey Richter’s eloquent “Land of Pain” in Willow Springs literary magazine.

IN FICTION:

Harrison, Jim. The Woman Lit By Fireflies. Boston: Houghton Mifflin, 1990.

Hustvedt, Siri. Blindfold. New York: W. W. Norton, 1992.

ON WOMEN AND PAIN (academic books)

Fillingim, Roger B., ed. Sex, Gender and Pain: Progress in Pain Research and Management. Vol. 17. Seattle: IASP Press, 2000.

Loder, Elizabeth and Marcus, Dawn, eds. Migraine in Women. Hamilton, Ontario, B.C., Canada: Decker and Company, 2003.

Wendell, Susan. The Rejected Body. New York: Routledge, 1996.

Wilson, Elzabeth A. Psychosomatic: Feminism and the Neurological Body. Durham, NC: Duke University Press, 2004.

CANDID ADVICE FOR FRIENDS

Tips from witty playwright Carolyn Gage. Written for those with chronic fatigue, but applies to all the “Tired Girls.” What you want to say to people but haven’t had the nerve to…

HIGHLIGHTED ARTICLES

ONLINE: New concept of seeing headache as chronic, not just episodic (something you can control by just avoiding triggers). Explored in January 2008 issue of the Lancet (neurology journal).

“On Pain’s Trail,” from LA Times, August 22, 2005. Unusually helpful and insightful article about central sensitization and its connection to many pain and fatigue problems, that are mainly experienced by women. This includes chronic headache, endometriosis, and fibromyalgia.

WEBSITES WITH PATIENT DIALOGUES:
http://www.headaches.about.com

http://www.migrainepage.com

http://www.chronicbabe.com

International: (available in French, Spanish, German & Portugese): http://membres.lycos.fr/migraineheadache/

NEW: The Daily Headache Blog by Kerrie Smyres of Seattle and a creative New York mom’s migraine blog

NONPROFIT ORGANIZATIONS

FOR GRACE
Dedicated completely to raising pubic awareness of women’s medical undertreatment of chronic pain. Founded by Cynthia Toussaint, a former ballerina who suffers from RSD. Holds conferences and lobbying sessions. Offers updated articles on women and pain: http://www.forgrace.org/women/in/pain/C12/

AMERICAN COUNCIL ON HEADACHE EDUCATION (ACHE):
Also offers newsletter, Headache, with latest medical information. Support group and doctor referral.
http://www.achenet.org

NATIONAL HEADACHE FOUNDATION:
Also offers newsletter, Head Lines, with latest medical information.
Support group referral.
http://www.headaches.org

MAGNUM: The National Migraine Association (Migraine Understanding Group:
A National Understanding for Migraineurs)
http://www.migraines.org/

AMERICAN CHRONIC PAIN ASSOCIATION:
Support group referral.
http://www.theacpa.org

AMERICAN PAIN FOUNDATION
Also offers electronic and paper newsletters, among many other patient resources.
http://www.painfoundation.org

MIGRAINE ACTION ASSOCIATION (Great Britain)
http://www.migraine.org.uk/

WORLD HEADACHE ALLIANCE
http://www.w-h-a.org

INFORMEDHEALTHONLINE.ORG
A clearinghouse of unbiased (not funded by a drug company) information evaluating studies in both alternative and Western medicine, from Australia.
http://www.informedhealthonline.org

MEDICAL JOURNALS & RESOURCES (articles have clear summaries in the beginnings)

The ultimate source for the latest medical research, compiled by Dr. Lawrence Robbins of Northbrook, IL
www.headachedrugs.com

Headache: The Journal of Head and Face Pain (published on behalf of American Headache Society)
http://www.ahsnet.org/journal/

Current Pain and Headache Reports
http://www.current-reports.com/home_journal.cfm?JournalID=PA

Cephalalgia (published on behalf of the International Headache Society)
http://www.blackwellpublishing.com/journal.asp?ref=0333-1024

For latest diagnostic classifications of headaches, see the web page of International Headache Society:
http://www.I-h-s.org

BOOKS ON PAIN:

FOR COPING WITH CHRONIC PAIN (MENTALLY AND EMOTIONALLY)
From the American Chronic Pain Association

http://theacpa.org

From Patient to Person: First Steps, by Penney Cowan (workbook). The videotape version is also recommended.

  • Pathways Through Pain series (videotapes). The first one, Accepting the Pain, is especially recommended.
  • Register, Cheri. The Chronic Illness Experience. Originally titled Living with Chronic Illness: Days of Patience and Passion. New York: Free Press, 1987. Center City, Minn.: Hazelden, 1999.

Nielsen, Patricia D. Living With It Daily: Meditations for People With Chronic Pain. New York: Dell, 1994.

Cleveland, Martha. Chronic Illness and the Twelve Steps: A Practical Approach to Spiritual Resilience. Center City, Minn.: Hazelden, 1988.

(on meditation) Kabat-Zinn, Jon. Full Catastrophe Living. New York: Delta, 1990.

Chronicbabe.com, a resource for the “young, hip and chronic.” A new generation’s approach to living as fully as possible with illness.

Butyoudon’tlooksick.com, by a lupus sufferer
FOR COPING WITH HEAD PAIN (PHYSICALLY)

Robbins, Lawrence and Susan S. Lang. Headache Help: A Complete Guide to Understanding Headaches and the Medicines that Relieve Them. New York: Houghton Mifflin, 1995.

Tepper, Stewart J. Understanding Migraine and other Headaches. Jackson: University Press of Mississippi, 2004

Young, William B. and Stephen D. Silberstein. Migraine and Other Headaches. New York: Demos Medical Publishing, 2004.

FIRST-PERSON ACCOUNTS

MEMOIRS:

(chronic daily headache) Reese, Hazel Lucretia. I Will Not Complain! My Life with Chronic Illness. Baltimore: Publish America, 2004.

(chronic pain) Heshusius, Lous. Inside Chronic Pain: An Intimate and Critical Account (The Culture and Politics of Health Care Work) (Hardcover): Cornell University Press, October 2009.

(trigeminal neuralgia) Levy, Carol Jay. A Pained Life: A Chronic Pain Journey. Xlibris, 2003

Hatak, Kristine. A Guided Tour of Hell: Migraine in the Words of its Victims. Roseville, CA: Dry Bones Press, Inc., 1999.

ESSAYS:

Bernardi, Andria. “Half-Cranium,” River Oak Review (Oak Park, Ill.), spring/summer 2003, 67-75

Didion, Joan. “In Bed”; Reprinted in The White Album, by Joan Didion. New York: Pocket Books, 1979.

Harden, Holly. 2003. “The Fish That Swim in My Head: A Life with Migraine Headaches” Utne Reader, Sept-October 2003, 45-47. Originally published in Fourth Genre.

Schuman, Beth. “The Sound of a Wild Snail Eating.” Missouri Review, Volume XXV, Nov. 2, 2002. (by a chronic fatigue sufferer)

Cahn, Susan K. “Come Out, Come Out Whatever You’ve Got! Or, Still Crazy after all these Years,” Feminist Studies 29, no. 1: (spring 2003): p. 7, 12 pages.
(chronic fatigue syndrome)

Chronic migraine patient and writer Mary Gustafson’s adventures:


pearIndiana Artist Christa Barnell, who has conveyed her experiences with chronic headache through vivid paintings

Feminist activist/pioneer and CDFIDs patient Naomi Weisstein’s account of survival in a hospital.

Stacey Richter’s eloquent “Land of Pain” in Willow Springs literary magazine.

IN FICTION:

Harrison, Jim. The Woman Lit By Fireflies. Boston: Houghton Mifflin, 1990.

Hustvedt, Siri. Blindfold. New York: W. W. Norton, 1992.


HIGHLIGHTED ARTICLES/PODCASTSClick Text Here

Interview with Cathy Glaser, founder of the Migraine Research Foundation, and Joel Saper, of the Michigan Head Pain and Neurological Institute. On Women’s Day radio, August 19, 2009.Stands out for discussing chronic daily headache, which Glaser’s daughter suffers from. Also raises awareness about childhood migraine/CDH, related symptoms (such as stomach pain and neck pain), and biological roots.

New concept of seeing headache as chronic, not just episodic (something you can control by just avoiding triggers). Explored in January 2008 issue of the Lancet (neurology journal).

“On Pain’s Trail,” from LA Times, August 22, 2005. Unusually helpful and insightful article about central sensitization and its connection to many pain and fatigue problems, that are mainly experienced by women. This includes chronic headache, endometriosis, and fibromyalgia.

WEBSITES WITH PATIENT DIALOGUES:
http://www.headaches.about.com

http://www.migrainepage.com

http://www.chronicbabe.com

International: (available in French, Spanish, German & Portugese): http://membres.lycos.fr/migraineheadache/

NEW: The Daily Headache Blog by Kerrie Smyres of Seattle and a creative New York mom’s migraine blog

NONPROFIT ORGANIZATIONS

FOR GRACE
Dedicated completely to raising pubic awareness of women’s medical undertreatment of chronic pain. Founded by Cynthia Toussaint, a former ballerina who suffers from RSD. Holds conferences and lobbying sessions. Offers updated articles on women and pain: http://www.forgrace.org/women/in/pain/C12/

AMERICAN COUNCIL ON HEADACHE EDUCATION (ACHE):
Also offers newsletter, Headache, with latest medical information. Support group and doctor referral.
http://www.achenet.org

NATIONAL HEADACHE FOUNDATION:
Also offers newsletter, Head Lines, with latest medical information.
Support group referral.
http://www.headaches.org

MAGNUM: The National Migraine Association (Migraine Understanding Group:
A National Understanding for Migraineurs)
http://www.migraines.org/

AMERICAN CHRONIC PAIN ASSOCIATION:
Support group referral.
http://www.theacpa.org

AMERICAN PAIN FOUNDATION
Also offers electronic and paper newsletters, among many other patient resources.
http://www.painfoundation.org

MIGRAINE ACTION ASSOCIATION (Great Britain)
http://www.migraine.org.uk/

WORLD HEADACHE ALLIANCE
http://www.w-h-a.org

INFORMEDHEALTHONLINE.ORG
A clearinghouse of unbiased (not funded by a drug company) information evaluating studies in both alternative and Western medicine, from Australia.
http://www.informedhealthonline.org

MEDICAL JOURNALS & RESOURCES (articles have clear summaries in the beginnings)

The ultimate source for the latest medical research, compiled by Dr. Lawrence Robbins of Northbrook, IL
www.headachedrugs.com

Headache: The Journal of Head and Face Pain (published on behalf of American Headache Society)
http://www.ahsnet.org/journal/

Current Pain and Headache Reports
http://www.current-reports.com/home_journal.cfm?JournalID=PA

Cephalalgia (published on behalf of the International Headache Society)
http://www.blackwellpublishing.com/journal.asp?ref=0333-1024

For latest diagnostic classifications of headaches, see the web page of International Headache Society:
http://www.I-h-s.org

BOOKS ON PAIN:

FOR COPING WITH CHRONIC PAIN (MENTALLY AND EMOTIONALLY)
From the American Chronic Pain Association

http://theacpa.org

From Patient to Person: First Steps, by Penney Cowan (workbook). The videotape version is also recommended.

  • Pathways Through Pain series (videotapes). The first one, Accepting the Pain, is especially recommended.
  • Register, Cheri. The Chronic Illness Experience. Originally titled Living with Chronic Illness: Days of Patience and Passion. New York: Free Press, 1987. Center City, Minn.: Hazelden, 1999.

Nielsen, Patricia D. Living With It Daily: Meditations for People With Chronic Pain. New York: Dell, 1994.

Cleveland, Martha. Chronic Illness and the Twelve Steps: A Practical Approach to Spiritual Resilience. Center City, Minn.: Hazelden, 1988.

(on meditation) Kabat-Zinn, Jon. Full Catastrophe Living. New York: Delta, 1990.

Chronicbabe.com, a resource for the “young, hip and chronic.” A new generation’s approach to living as fully as possible with illness.

Butyoudon’tlooksick.com, by a lupus sufferer
FOR COPING WITH HEAD PAIN (PHYSICALLY)

Robbins, Lawrence and Susan S. Lang. Headache Help: A Complete Guide to Understanding Headaches and the Medicines that Relieve Them. New York: Houghton Mifflin, 1995.

Tepper, Stewart J. Understanding Migraine and other Headaches. Jackson: University Press of Mississippi, 2004

Young, William B. and Stephen D. Silberstein. Migraine and Other Headaches. New York: Demos Medical Publishing, 2004.

FIRST-PERSON ACCOUNTS

MEMOIRS:

(chronic daily headache) Reese, Hazel Lucretia. I Will Not Complain! My Life with Chronic Illness. Baltimore: Publish America, 2004.

(chronic pain) Heshusius, Lous. Inside Chronic Pain: An Intimate and Critical Account (The Culture and Politics of Health Care Work) (Hardcover): Cornell University Press, October 2009.
(trigeminal neuralgia) Levy, Carol Jay. A Pained Life: A Chronic Pain Journey. Xlibris, 2003.

Hatak, Kristine. A Guided Tour of Hell: Migraine in the Words of its Victims. Roseville, CA: Dry Bones Press, Inc., 1999.

ESSAYS:

Bernardi, Andria. “Half-Cranium,” River Oak Review (Oak Park, Ill.), spring/summer 2003, 67-75

Didion, Joan. “In Bed”; Reprinted in The White Album, by Joan Didion. New York: Pocket Books, 1979.

Harden, Holly. 2003. “The Fish That Swim in My Head: A Life with Migraine Headaches” Utne Reader, Sept-October 2003, 45-47. Originally published in Fourth Genre.

Schuman, Beth. “The Sound of a Wild Snail Eating.” Missouri Review, Volume XXV, Nov. 2, 2002. (by a chronic fatigue sufferer)

Cahn, Susan K. “Come Out, Come Out Whatever You’ve Got! Or, Still Crazy after all these Years,” Feminist Studies 29, no. 1: (spring 2003): p. 7, 12 pages.
(chronic fatigue syndrome)

Chronic migraine patient and writer Mary Gustafson’s adventures:

pearIndiana Artist Christa Barnell, who has conveyed her experiences with chronic headache through vivid paintings

Feminist activist/pioneer and CDFIDs patient Naomi Weisstein’s account of survival in a hospital.

Stacey Richter’s eloquent “Land of Pain” in Willow Springs literary magazine.

IN FICTION:

Harrison, Jim. The Woman Lit By Fireflies. Boston: Houghton Mifflin, 1990.

Hustvedt, Siri. Blindfold. New York: W. W. Norton, 1992.