Unique Pain of Ehlers-Danlos Syndrome

I notice that my EDS causes me both acute and chronic pain, not exclusively one or the other as with most other conditions.

Acute pain comes from joint subluxations (usually not complete dislocations) and repeated injuries/insults to our fragile connective tissues.

A subluxation of a joint is where a connecting bone is partially out of the joint. In contrast to a luxation [dislocation], which is a complete separation of the joints, a subluxation often returns to its normal position without additional help from a health professional. -Wikipedia

Chronic pain develops due to the persistence of so many painful areas that our bodies become centrally sensitized.

Inspire EDS support group moderator “Slap-A-Smile-On” writes this about EDS pain:

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. Francomano 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. Francomano’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.

EDSers, as well as many other humans, are vitamin D deficient. The problem with that is that vitamin D deficiency causes joint pain and higher pain levels. Dr. Levy, EDS expert, recommends our serum levels be at least 40.
http://ehlers-danlos.com/loose-connections/winter2010.pdf

Sleep disorders and fatigue are a common problem for those with EDS. But being fatigued and sleep deprived also makes pain worse so they need to be attacked. “Non-Restorative Sleep in EDS: A Manifestation of Autonomic Dysfunction”
http://ehlers-danlos.com/2013-annual-conference-files/Pocinki_NonRestorativeSleep.pdf
and CSF Ehlers-Danlos Syndrome Colloquium-Dr. Alan Pocinki http://vimeo.com/35766364

Mark’s 16 Page article about EDS Pain and what to do about it:
http://ehlers-danlos.com/loose-connections/LooseConnections_2012_Spring_rev .pdf

Dr. Tennant’s Intractable Pain Patient’s Handbook for Survival: http://www.coccyx.org/medabs/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

Michelle O’Sullivan & Michele Pavlis, 2012 Conference, “Occupational Therapy Management of Hypermobility in EDS”, http://ehlers-danlos.com/2012-annual-conference-files/OSullivan_Pavlis_Occu pational_Therapy_Management.pdf

Dr. Pradeep Chopra “Pain Management in EDS”, 2013 Conference,
http://ehlers-danlos.com/2013-annual-conference-files/Chopra_Chronic_pain_a nd_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, https://ehlers-danlos.com/2013-annual-conference-files/Healy_EDS_Presentatio n_3notesS.pdf

Dr. Howard Levy, “A Truly Multidisciplinary Approach to Managing Pain and Fatigue”, 2013 Conference,
https://ehlers-danlos.com/2013-annual-conference-files/Levy_Multidisc_Approa ch_to_Pain_Fatigue_2slidesS.pdf

Abbas Qutab, MBBS, DC, PhD, OMD, “Botanical Medicine and Dietary Interventions to Alleviate Pain and Inflammation”, 2013 Conference,
https://ehlers-danlos.com/2013-annual-conference-files/Qutab_Providence_Conv ention_2slidesS.pdf

Dr. Pradeep Chopra, 2015 EDNF Conference, “Pain Management in Ehlers-Danlos Syndrome – 2015”,
http://ehlers-danlos.com/2015-annual-conference-files/Chopra.pdf

Kevin Muldowney, 2015 EDNF Conference, “How Physical Therapy can decrease your pain while living with EDS”,
http://ehlers-danlos.com/2015-annual-conference-files/Muldowney.pdf

Ellen Lenox Smith, 2015 EDNF Conference, “Ehlers Danlos and Medical Marijuana”,
http://ehlers-danlos.com/2015-annual-conference-files/Smith.pdf

Dr. Albina Tamalonis, 2015 EDNF Conference, “Less Is More Treating Ehlers-Danlos Syndrome with Traditional and Ericksonian Approaches to Psychotherapy and Active Guided Meditation”,
http://ehlers-danlos.com/2015-annual-conference-files/Tamalonis.pdf

“Five-Step Plan Helps Patients Cope with Pain” http://www.medscape.com/viewarticle/810945

Pain Management in Ehlers-Danlos Syndromes, Pradeep Chopra, et. al., 2017
https://www.ehlers-danlos.com/pdf/2017-FINAL-AJMG-PDFs/Chopra_et_al-2017-American_Journal_of_Medical_Genetics_Part_C-_Seminars_in_Medical_Genetics.pdf

Gentle hugs…

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