Friends, please donate if you can! I need your help more than ever. My #chiari is getting worse, my neck is weakening, and the pain is flat out miserable. Fundraising link is in my profile! Please #donate #atx #butyoudontlooksick #cpap #chronicpain #chronicillness #dysphagia #eds #ehlersdanlos #ehlersdanlossyndrome #fusion #fatigue #gerd #insomnia #inflammation #invisibleillness #mcas #mcad #mastcells #neckpain #nervepain #occipitalneuralgia #painsomnia #reynauds #spoonie #tmj #zebra #zebrastrong
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Damn it would really suck if my middle finger turned black and fell off.... #karma #reynauds #fingers #poorcirculation #edrecovery #edsoldiers #coldgirlproblems
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Check out our insta story right now to get some top tips on bike packing! Share your stories with us too! #bikepacking #adventure #fromwhereweride thanks @frikfrak74 @goreapparel #toptips #scotland #reynauds #packing
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It’s 8:38pm and it’s 40 degrees outside. Sitting in front of the fireplace, and can’t feel my toes. Remembering warmer days gone by (like the sweltering day the amazing @katesupaa took this pic) and wondering how I survived the first 21 years of life in the frozen tundra that is NY. • • • In other news, I have a few coaching slots available for Tuesday & Wednesday. Slide on into my DM and let’s get you a freeeee introductory sesh on the calendar! • • • #vestal #newyork #eastcoast #usa #america #fall #feelslikewinter #reynauds #ineedwarmersocks
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snuck in a quick solo ride today but had to cut it short when my hands and feet turned into blocks of ice too stiff to ride properly 😅 thx Reynauds 🤷🏻‍♀️ #motolife #canadianwinters #reynauds #ineedwintergear
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Truth! YOU NEED PROARGI9!!
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I flung myself into an unpleasantly chilly pool, to help teach kids how to use PFDs. They had fun. I am COLD. #rey#reynaudsomenon #reynauds #yesmylipsareblue #imfineiswear #thehottubisnothot #isitnaptimeyet #mykneehatesmenow
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This is what a light attack of #reynauds looks like. My left hand is fine but my right hand is much lighter reflecting the loss of circulation which is causing a cold, numb, pain to be felt. Also I had no idea my hands were so huge 😂😂
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I only got 211 steps...but I was at a 4hr dr appt 30 mins away from home. During that visit in order to properly diagnose he had to do a couple things that is equal to torture. It was completely worth it. Got my official POTS & Reynauds diagnosis plus met all criteria for Chronic Fatigue Syndrome by a CFS expert. Now to start the process of slowly changing things to see if any of it helps 🤞🏻. Also got a prescription for a lightweight wheelchair to help me get out, but I need someone with me to go anywhere as my arms/hands can’t do it on my own. While getting a wheelchair has been something I’ve had to mentally prepare for, I’m ready to get out and not use all my energy just getting there #1000steps #CFS #chronicfatiguesyndrome #POTS #Reynauds #HEDS #ehlersdanlossyndrome #fibromyalgia
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The main reason I took up crochet was to help with my hands. A combination of osteoarthritis, Ehler-Danlos Syndrome and Reynaud's leaves them pretty much useless, so daily crochet keeps them moving and helps alleviate some of the, often, unbearable pain. I can highly recommend crochet as a means of therapy, physical and mental, and it's not unusual to find me crocheting away, often even with my gloves on! #WorldArthritisDay #hooker #cro#crochet #yarnporn #crochet #crochetaddict #crochetlove #crochetersofinstagram #crochetlife #spoonie #pai#painrelief #arthritis #pain #disabled #zeb#zebraior #zebra #reynauds
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Rise up to each and every occasion as YOU, as the amazing person YOU are, and with all the confidence and strength that you know YOU have. This world is yours to create and grow within, so get out there and make the most of it... #uthermic #coldscreen #inspiredbywarmth
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