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November 20, 2017November 6, 2017 Capricious Lestrange

Autonomic Dysfunction in EDS

Dr. Alan Pocinki discusses the Evaluation and Management of Autonomic Dysfunction in EDS in this presentation given at the 2017 Ehlers-Danlos Society Global Learning Conference held in Las Vegas.

For the presentation slides, go here.

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Posted in EDS, POTS, SpoonieTagged Alan Pocinki, Autonomic dysfunction, dysautonomia, EDS, Ehlers Danlos Society, Ehlers Danlos Syndrome, Fatigue, Neurally Mediated Hypotension, NMH, Patient Education, Postural Orthostatic Tachycardia, POTSLeave a comment

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Acceptance doesn't mean giving up or giving in. It means being realistic and understanding you'll be spending the rest of your life adapting to a constantly changing body. It means coming to accept and love the imperfect and see that there is beauty in that imperfection. It means knowing that though we may be broken, we are still enough. Always. Through that knowledge, we can find peace. We can stop worrying about what's "normal," or what "should" be. We can stop allowing the opinions of others to have undue influence over our self-worth. We can slow down and allow ourselves the time we need to finally complete life's most important journeys. We can take the time and space we need to heal and grow and break and heal again without feeling selfish. Acceptance is a work in progress, something we must nurture and grow. It resides inside each of us. #spoonies #chargie #chronicillness #ehlersdanlossyndrome #EDS #MCAS #POTS #Gastroparesis #migraine #mecfs #fibromyalgia #IBS #CRPS #interstitialcystitis #chronicpain #backpain #degenerativediscdisease #complexPTSD

TRUTH! I'm still working on getting rid of the pile-on from my days of taking these nerve killing drugs. These drugs (along with Lyrica, cymbalta and similar) will not only cause you to gain weight. There's a giant host of nasty side effects, some of which have turned out to be permanent for me. There's a good reason big pharma and I aren't exactly friends, and this is only one of many. Have nerve pain? Try fasciablasting. The only side effects of that are better health and fitness, increased blood flow and a natural glow. #spoonies #chargie #chronicillness #ehlersdanlossyndrome #EDS #MCAS #POTS #Gastroparesis #migraine #mecfs #fibromyalgia #IBS #CRPS #interstitialcystitis #chronicpain #backpain #degenerativediscdisease #nervepain #gabapentin #neurontin #bigpharma #naturopathicmedicine #holistichealing

Huge difference, isn't there? Being positive in the face of calamity is an important skill, but there's constructive hope and there's toxic positivity. Toxic positivity is usually an unrealistic command or expectation to ignore reality and just get along to go along. Validation and hope tells the person it's okay to feel the way they do and attempts to help them adapt their perspective, or bolster them with support. Funny thing is, it only takes a few extra words to get from one to the other. Help in shifting perspective can be everything during tough times. #spoonies #chargie #chronicillness #ehlersdanlossyndrome #EDS #MCAS #POTS #Gastroparesis #migraine #mecfs #fibromyalgia #IBS #CRPS #interstitialcystitis #chronicpain #backpain #degenerativediscdisease #complexPTSD #mentalhealth #depression #anxiety

No one would ever sign up for this shit! #spoonies #chargie #chronicillness #ehlersdanlossyndrome #EDS #MCAS #POTS #Gastroparesis #migraine #mecfs #fibromyalgia #IBS #CRPS #interstitialcystitis #chronicpain #backpain #degenerativediscdisease #complexPTSD #anxiety #depression #zebrastrong #spoonielife

So the apartment we looked at yesterday definitely has a mold issue. Even wearing my respirator mask, 30 minutes was all it took to bring me to my knees so it's definitely a no go and do am I. No bragging about getting out of my Pjs today, but they're cute! Almost as cute as my #guardcat 😻 #spoonies #chargie #chronicillness #ehlersdanlossyndrome #EDS #MCAS #POTS #Gastroparesis #migraine #mecfs #fibromyalgia #IBS #CRPS #interstitialcystitis #degenerativediscdisease #dayinbed #zebrastrong

My husband really gets his Valentine. Definitely want to work toward collecting all of these great @originalfunko #deadpool #mysteryminis 😍 My car-hop is so cute! #anniversary #valentines #marvel #mercwithamouth #Iknowyourejealous #deadpoolismyspiritanimal #spoonies #trifectazebra #EDS #laughteristhebestmedicine

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