From a fellow researcher and longtime Inspire.com-EDNF forum member, “SlapASmileOn”, here’s her whole page of links to everything you need to familiarize yourself with EDS and pain. Many are from our advocate organization, the Ehlers-Danlos National Foundation,. and doctors who specialize in EDS.
Pain in EDS is unique in the medical world because it is one of the few conditions causing both chronic and acute pain. To address this pain, we often have to use a variety of medicinal and non-medicinal strategies. This requires becoming a collector of methods of pain relief; a toolbox to battle pain.
In addition to medicinal options you can work out with your doctor, some non-medicinal options include TENS unit, heating pad, ice, Topical products like Biofreeze or Tiger Balm, Warm soaks with Epsom salts, braces, canes, walkers, scooters, wheelchairs, Meditation, Biofeedback, Deep Breathing, Physical Therapy, Exercises, Massages, Acupuncture, Dry Needling, and Distraction. There are more options, but the more you can access when needed, the better your pain control will be.
Dr. Francomono describes her 5% Plan for Pain Relief. Take, for instance that your medications take care of 20% of your pain relief. 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 would your days be different if 75% of your pain was gone? Dr. Francomono’s plan demonstrates the importance of using multiple strategies…even if each one only makes a tiny difference, the difference made when they all are added together is significant.
Mark’s 16 Page article about EDS Pain and what to do about it: http://www.ednf.org/documents/Pain_and_Managing_Pain_2012S.pdf
Dr. Levy’s 2011 Conference presentation on Pain Medications for EDSers: http://www.ednf.org/index.php?option=com_content&task=view&id=2052&Itemid=8 8889219
Dr. Tennant’s Intractable Pain Patient’s Handbook for Survival:http://pain-topics.org/pdf/IntractablePainSurvival.pdf
World Health Organization’s (WHO) Guidelines on the Pharmacological Treatment of Persisting Pain in Children with Medical Illnesses…though parents need to be aware of the large risks with NSAIDS like Ibuprofen as well as other classes of medications: http://whqlibdoc.who.int/publications/2012/9789241548120_Guidelines.pdf
Anne Lynch-Jordan, PhD 2012 Conference presentation including Cognitive Behavioral Therapy, Biofeedback, Meditation, etc., “Pain Management: More than Just a Pill” http://www.ednf.org/images/2012Conference/Handouts/Lynch-Jordan_Pain_Manage ment_More_than_a_Pill_3notesS.pdf
Michelle O’Sullivan & Michele Pavlis, 2012 Conference, “Occupational Therapy Management of Hypermobility in EDS”, http://www.ednf.org/images/2012Conference/Handouts/OSullivan_Occupational_T herapy_Management_of_Hypermobility_in_EDS_notes.pdf
Dr. Padeep Chopra “Pain Management in EDS”, 2013 Conference, http://www.ednf.org/images/2013Conference/Presentations/Chopra_Chronic_pain _and_EDS_Final_1slideS.pdf
Michael P. Healy, PT, DPT, DOMTP, CSN, CPT, MBA, “A Unique Pain Management Treatment for EDS Patients: Manual Therapy Approach”, 2013 Conference, http://www.ednf.org/images/2013Conference/Presentations/Healy_EDS_Presentat ion_2slidesS.pdf
Dr. Howard Levy, “A Truly Multidisciplinary Approach to Managing Pain and Fatigue”, 2013 Conference, http://www.ednf.org/images/2013Conference/Presentations/Levy_Multidisc_Appr oach_to_Pain_Fatigue_2slidesS.pdf
Abbas Qutab, MBBS, DC, PhD, OMD, “Botanical Medicine and Dietary Interventions to Alleviate Pain and Inflammation”, 2013 Conference, http://www.ednf.org/images/2013Conference/Presentations/Qutab_Providence_Co nvention_2slidesS.pdf
“Five-Step Plan Helps Patients Cope With Pain” http://www.ednf.org/index.php?option=com_content&task=view&id=2319
Systemic damage from chronic pain:
One description of the effects of untreated chronic pain on the brain: http://wellescent.com/health_blog/the-damaging-effects-of-chronic-pain-on-t he-brain
And another description of the damage to the brain with untreated chronic pain: http://www.sciencedaily.com/releases/2008/02/080205171755.htm
Chronic Pain causes changes to brain which are reversible once it is treated, depression, and anxiety: http://en.wikipedia.org/wiki/Chronic_pain
Chronic Pain causes the Immune system to not work well: http://www.sharecare.com/question/chronic-pain-affect-immune-system
Chronic Pain causes sleep disturbances: http://www.sleepfoundation.org/article/ask-the-expert/pain-and-sleep
Chronic Pain causes harmful biochemical changes to many body systems like cognition, GI system, cardiovascular system, neuroendocrine system, growth hormones, cortisol, and more: http://www.nursingtimes.net/nursing-practice-clinical-research/understandin g-the-physiological-effects-of-unrelieved-pain/205262.article
Chronic pain and Depression: http://www.health.harvard.edu/newsweek/Depression_and_pain.htm
Thank you, SASO!
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