Made it out of the house somehow for a non medical appointment. Only happened because I have no appts this week. I wasn’t out very long, but when I went to pick up the dog from the groomers I couldn’t stand any longer. My legs were literally shaking and my heart rate was 20 above where I should stop. No chairs, so I sat on the doggy beds while I waited. #potsproblems #madeitoutofbed #stronger #endmecfs #myalgicencephalomyelitis #POTS #dysautonomia #EDS #CFS #PEM #chr#chronicfatiguesyndrome #chronicfatigue #fibromyalgia #bedridden #bedbound #zebra #spoonie #reynauds #chronicpain #unr#unrested #millionsmissing #CCI #cranialcervicalinstability #posturalorthostatictachycardiasyndrome #costochondritis #unrest
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Seriously though. I was in the shower at the gym and I just started pondering this very important question. I use my super bendy powers to reach all of my back. How do normal bendy people do It? And what about hypomobile (is that a thing?) people do It? Do they just not? Is there a large population of people with a smelly bit on their upper backs that they just can't wash? . . . . #eds #ehlersdanlos  #jointhypermobilitysyndrome #hypermobility #hypermobilitysyndrome #hypermobile  #zebrastrong #spoonie #medicalzebra #dysautonomia #ehlersdanlosawareness #chronicillness #chronicpain #myalgicencephalomyelitis #chronicfatigue #chronicfatiguesyndrome #posturalorthostatictachycardiasyndrome #spooniewarrior #disabled #disability #disabilityawareness #invisibleillness #butyoudontlooksick  #reynauds #disabodyposi #wheelchair #wheelchairaware
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Due to having #reynauds my feet were so cold today I couldn’t feel the bottom of my feet on the #treadmill so..... I used a #triggerpoint roller to eliminate knots in the calf and increase #bloodcirculation . . . . #adventuresinfitness #foamrolling #myofascialrelease #fitness #fitpro #selfcare
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Kids are running the dog for me because it’s too cold for me to be outside.❄️ #reynauds #lupus #icequeen #family #wetakecareofourown 💙
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The joys of reynauds syndrome! & this is inside 😬 #reynauds #circulation #rollonsummer
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Throw back to a much needed vitamin D session! It’s almost hot enough in Florida for sunny beach days! #rey#reynaudsrome #reynauds #reynaudssucks #alwayscold #sunnydays #floridagirl #beachdays
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My daily struggle with #crps #dysautonomia #arthritis #reynauds
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Pillbox upgrade. My old one is too small for the amount of meds I'm on now. A few weeks ago I was diagnosed with Systemic Scleroderma, which is an autoimmune disease. The Reynauld's I *thought* I had turned out to be secondary, and a symptom of the scleroderma. I'm waiting to see my lovely consultant again for the results of a heart ultrasound, a chest xray and a lung function test, as the condition can attack my innards too, as well as the glamour of blue fingers and digital ulcers. I'm not entirely sure I fully understand the condition, but the SRUK website has been brilliant in helping me start to learn about it. I'm keeping an open mind and thinking positive thoughts about the future 😊#scleroderma #sruk #reynauds #autoimmune #raredisease
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MY FEET ARE WARM 💕😭🔥My feet are painfully cold/numb 24/7. Fellow auto-immune folks: I encourage you to try @allbirds. They have a generous returns policy. I am not being paid to say this. And yes, I’ve tried wool socks, they did not have the same affect. #reynauds #reynaudsphenomenon #reynaudssyndrome #autoimmune #coldfeet #allbirds #wool #woolshoes #sewing #seamstresslife
35 2
Skiing was so fun but Reynauds is awful! My fingers were icy yellow and disgusting-looking AND THEN THESE CAME ALONG 😍 😍 😍 I'm so happy. #hothands #reynauds #reynaudssyndrome #reynaudssucks #col#colds #circulation #cold #snow #skiing #boarding #snowboarding #powder #altitude #weightloss #weightlossjourney #weightlosstransformation #lifestylechanges #notadiet #health #wellness #wellbeing #fitness #food #diet #exercise #cardio
43 2
Why must #chr#chronicpain be such a vindictive bastard?! Horrible leg pain this morning as I work up, and my lower back and tailbone were throbbing in pain. I took two norco + 1 Benadryl, so I’m hoping they kick in soon. And the US #attorneygeneral thinks people with #chronicpain just need to #toughitout?’ How about they live a day in agony, then tell me to tough it out with our pain meds.
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Just warming my toes on the space heater because I walked outside wearing #toms in February in #Utah and my little toes protested. #reynauds
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Plagued with #reynauds , it's hard to do stuff outside. But with my new heated gloves! We will see how I handle the cold on my next adventure out in the bush. #ironman heh
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Whenever I post photos of my hands I always edit the photo so they look more “normal”👌🏼 - my hands (and feet) are usually purple or beet red because I have Reynauds. . . . I NEVER post pics of my hands but I wanted to be real with y’all 💁🏻‍♀️ - this, along with other health issues, is why I decided to start this health and fitness journey. A constant reminder of how I need to treat my body right. Working out has been so great in helping my circulation!! 🙌🏼 and I have so much more energy! (Coming from the girl who could take 3 naps in a day if I had the opportunity 😂😉) - starting this journey has already helped a TON and I can’t wait to do what I can to take back some control of my health! 💪🏼♥️ . . . #bbg #bbgcommunity #bbggirls #bbgweek4 #fitfam #healthyliving #lifestylechange #reynauds #purpleismycolorthankfully #fitness #healthjourney
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When it hurts, you're tired, just pause & rest. Don't keep trying to do things for people even then, eventually they will understand that you need the rest. And once you rest, the pain & toxicity will vanish! #worklifebalance #lifestylechoices #autoimmune #pain #stress #rheumatoidarthritis #psoriasis #psoriaticarthritis #ankylosingspondylitis #lupus #lupusnephritis #reynauds #thyroid #hashimotos
48 1
Bleh. 3 specialist appointments today, one tomorrow morning. I'm so exhausted and hurty from the drugs. Waiting for the last appointment of the day, then a bunch of blood work. I'm ready for a good ol' naptime. 😴 My gi is going to let me pick the kind of biologic I want to treat my UC when I'm done the prednisone so I am doing some research before I see my hematologist. #spoonie #spoonielife #prednisone #itp #autoimmune #autoimmunedisease #vasculitis #ibd #reynauds #scleroderma #dvt #chronicillness #chronicpain #chronicfatigue
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Ibuprofen, acetaminophen, avocados...which one doesn’t belong? Avocados. Because despite being an anti-inflammatory, they don’t wreak havoc on your gut or your liver. Ever wonder why they make you pay that extra $1.25 for guac at chipotle? ‘Cause its a cheap substitute for expensive, nasty pharmaceuticals. Not only are avocados delicious, they’re extremely nutritious. Avocados are high in Omega-3s, which help power your brain, and keep your cognitive abilities...well...able. Avos are great anti-inflammatory foods, as they’re high in Vitamins E, and C. They also contain polyhydroxylated fatty alcohols which do the same. They possess persenone A which has been shown to keep inflammation at bay. Their high potassium content is great for reducing the risk of kidney/heart ailments and high blood pressure, as well as mitigating nasty hangovers (but hey, no alcohol allowed!). Avocados are high in fiber, so they’ll keep your blood sugar steady, and your bowels...um...moving...and your body detoxed. They’re also great healthy fats, and allow for fat soluble vitamins (like A, D, and K) be absorbed. The healthy monosaturated fats in avocados also boost your feeling of satiety, or fullness, which can lead to weight loss. These fats also reduce bad cholesterol (LDL), and have been shown to raise the good (HDL). Avocado oil is also extremely healthy to cook with, as it’s one of the few whose molecules don’t breakdown at high heat. Avocados are also high in folate, B Vitamins, vitamin K, lutein, beta-carotein, and sooooo many more. These vitamins cumulatively help the body fend off cognitive and energy issues (Bs), vision problems (lutein), osteoporosis (K), and cancer growth. So...if you were ever stranded on an island, and had to eat one food...choose the avocado. It’s delicious, is the main ingredient in guacamole (God Bless), and makes for great...shirts...avocaDONT YOU AGREE? PS, totally waited until this backordered shirt arrived to post this.
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Essential oils...should we hop on the bandwagon? I’d say I’m 50/50 on them, but take it for what you will—we’re all entitled to our own opinions. However, I will share some of the oils that have helped with my autoimmune symptoms. Vetiver - struggle with insomnia? I’m always tired n’ wired, or awake throughout the night with fevers. Pumping this through my diffuser throughout the night + rubbing it on my feet/taking a warm bath with it before bed had helped me chillax and mellow out...and fall back asleep, for the most part. Lemongrass (not pictured) - supposedly it’s great for low thyroid, so I rub some on mine every AM. Does it help? I’m not really sure. But it does wake me up, and make my neck smell damn good. Frankincense - when taken orally, it’s been linked to a reduction in inflammation. Also, adding into some vitamin E oil is great for the skin, and scarring. Topically, it’s been shown to help RA patients cope with pain. Deep Blue - used to be a sworn user of tiger balm until this stuff showed up into my life. It’s like 10x stronger, and for those with muscle pain/fibromyalgia, I promise it’s worth the try! DigestZen (not pictured) - I’ve personally had bad experiences with absinthe, so the taste of fennel/licorice is repulsive...HOWEVER, this has helped me with my bloating and indigestion (I have IBS badly) Give her a whirl! Lemon - get tired of only being allowed certain teas or beverages on AIP? Throw some of these into your H2O or carbonated water! Really spiced things up. I’m not exclusively an advocate for @doterra , but their products have served me well. When buying oils, make sure you’re buying high-quality, pure oils. Those with additives tend to have adverse effects and cause skin irritation/body reactions. No bueno! Anyone else recommend any others that have helped them?
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Sorry for the silence, but I’ve been down with the stomach bug for a few days! It’s caused a bit of a flare with my GI symptoms, so my bed has been my main priority since Friday. Finally had enough energy to get up and make some soup (I thank the steroid shot), and thanks to my roommate’s instapot, it was ready in about 25 minutes. These things are God’s gift to foodies with no time. I threw in: 1 onion 8 carrots 4 parsnips 2 rutabagas 1 small cabbage 8 stalks of celery 1 box of @pacific chicken broth 8 stalks of celery 2 chicken breasts, 3 legs 4 bay leaves 4 garlic cloves 1” turmeric root Oregano Parsley And cranked that b!+)H on for 30 minutes. Not too bad, and the stock was beautifully golden! Wouldn’t even be a bad idea to strain out the veggies and chicken, and drink this separate for a really sour tummy. Again, cooking AIP friendly doesn’t have to be hard, and @instapot makes it 100x easier. Bless my roommate for introducing it into my life! #AIP #FastAIP #AIPsoups #rootveggiesaremylife #chickensoup #autoimmuneprotocol #instapotislife #instapotdoesAIP #Rutabegginyoutotrythis #sjogrens #lupus #reynauds #rheumatoidarthritis #alltheillnesses #allthefoods
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Reynauds toes. -.- in the colder months I'm stuck with pain in my fingers and toes whenever I go outside, and to cap it off the worst affected digits swell up like damn sausages. After a shower the worst ones go black. I get stranded indoors and its enough to drive a woman mad!! #reynauds #reynaudsawareness #reynaudssyndrome #blacktoes #cold #circulation #fedup
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When it's a socks -under 60 denier tights-under leggings kind of run. ❄️ ❄️ . #defyexpectationstogether #conquerthecold #reynauds
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In this morning’s edition of Tales From a Carless Life, Kristin found it a challenge to huff it the 2,300 steps to the gym on a frost covered and icy Monday. But she persevered because she has to combat the wine and gravy diet she has adopted and also gets to do fun things like walk by the Sigmund Freud house, silently judge all the morning smokers heading to work, and meander home with a hot cappuccino whilst wondering when the feeling will return to her toes. #itsagoodlife #expatlife #londoncalling #babyitscoldoutside #reynauds
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One of those days today....one meme just isn't enough 😖 Getting increasingly frustrated with worsening gasteroparesis symptoms (thanks prozac), absolutely exhausted and sick of everything. Today so far : Awake since 3am. Gave up on sleep at 4.45am. Had breakfast and meds and fed the girls (Asha 🐱 and Leah 🐶). Did some yoga...with both girls trying to snuggle/play with me. Scooped litterboxes, made the beds, unstacked dishwasher, fed the boys (Grischa 🐱 and Shenka 🐱), washed up cat and dog bowls. Mediated a disagreement between Asha and Grischa. Smelt cat poop. Searched house for cat poop but couldn't find any. Hope it was just a smell... Cleaned the downstairs of the holiday cottage in preparation for tomorrow's guests. (This is my job...being a cleaner does not mix well with chronic pain, but it means I can work for my parents rather than outside of the home, and lets me set my own hours to an extent). Spent 2hrs in the bathroom fighting my body, without much success. Got heat pads and hot water bottles (had to get mum to fill the bottles because my hands won't work right today). Had lunch and lunchtime meds. Forgot to take pain meds, but no energy left to go get a drink to take them with. Eating is tough right now, as everything makes me nauseous and triggers #GERD and stomach cramps. Not eating enough as a result, which makes me even shakier than normal. Wanted to have a bath today, but it's not gonna happen. I and my GP suspect #hEDS or #JHS, as well as #POTS, in addition to already dx #fibro, #reynauds, #gas#gasteroparesis, #osteopenia, #ibs, #coeliac disease, non-specific allergic rhinitis, and several mental illnesses. I'm just having a bad day, possibly because I've pushed too hard this morning. The gasteroparesis symptoms are really getting to me, and I'm sick of being in pain and exhausted. Sorry for the long rant. Just needing to vent today. #spoonie #spooniewarrior #edszebrawarrior #gasteroparesis #spoonieyoga #invisibleillness #chronicillness #chronicpain #fibrowarrior #fibromyalgia #pain #sick #tired
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Made these Fantail Shell Fingerless gloves using some leftover @cygnet_yarns boho spirit yarn from @snufflebeanyarn and the amazing pattern by @puddnhead They are such a quick make and so cosy! There will be more........... http://byrobin.blogspot.co.uk/2017/09/fantail-shell-stitch-fingerless-gloves.html?m=1 #crochet #cygnetyarns #bohospirit #fingerlessgloves #wristwarmers #reynauds #handmade #crocheted #instacrochet #crochetersofinstagram #winterwarmers #cosy #happy
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Do you see what this says? 👆👆👆👆 Order now and see for yourself what our CBD oil can do for you! 📲 HempWorx•com/YouGotThis . . . #cbd#cbd/a> #cbd #hemp #pureoil #organicoil #nongmo #madeintheusa🇺🇸 #fibromyalgia #arthritis #seizures #reynauds #bloodpressure #hempworksdistributor #naturalrelief #godsmedicine
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Least favorite thing about winter #reynauds
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25/80 Leg Day Challenges #1 Upping weights! #2 Reynauds flare up! (White part of toes) Had to stop and put on Toe Warmers. Crazy using these inside with temp near 68. #3 Bonus round! One minute squat hold. Feeling stronger mentally and physically! #80dayobsession #uppedweights #reynauds #stronger
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Febuary is Heart disease and heart health, congenital heart defect, stroke, cancer prevention, marfan, Age-Related Macular Degeneration, Low Vision, Prenatal Infection Prevention, Reynauds, Ovarian cancer, mental health. Loin pain haematuria syndrome, retinitis pigmentosa, lymphedema, Eisenmenger Syndrome, Arrhythmogenic right ventricular dysplasia, Brugada Syndrome, Noonan syndrome. Whipple Disease, Turner syndrome, ectodermal dysplasia, and gum disease awareness month. Please let me know if I have left any out. If you have or have had one of these and would like to raise awareness, send us a message, we would love to raise more awareness about these conditions and what it's like to have and to live with them. Also, remember it's Black History Month! Sorry this is so late by the way. So much love, strength and hope to you all - Nat xxx💜❤💛🌿🙏💪
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Scientific proof that my hands are always cold 😂 #badcirulation #reynauds #everyirishgirl
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Went on a quick roll in the city this evening. Very cold. #reynauds
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#reynauds #reynaudsseason my circulation suuuucks Whenever I do home work, my right hand swells up and get hot and itchy and hurty
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Joint pain is terrible today I can’t wait for warmer weather. Hands feel like they were smashed with a hammer 🔨 #popforreedy #teamreedy #lupuswarrior #lupussucks #reynauds
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The hardest part about this entire experience thus far has probably been the everyday struggle of work. Probably really pounding the brain fog talk into the ground, but it’s been a pretty rough week. I’ve always been able to think...to create, to imagine, to formulate a solution, to contribute to a team effort for the better. My ideas might not be the greatest, but it’s something. I work hard. Now I feel like they dead end. Sometimes I can’t even remember what I’ve come up with, when I thought about it ten minutes prior. Sometimes I can’t even think of a word I want to use when I’m speaking in the middle of a meeting. It sucks. What sucks even more is letting a group of people down that feel like a team, or even moreso, a family (ask 95% of us, we consider each other kin more than our own blood). Being delegated responsibilities that should be demanding (not impossible, just require thought and patience) and being unable contribute your portion to the 100% expectation level you have for YOURSELF really lowers morale—that others have for you...that just lowers anything left. Like, the resources are there...the brain that I was hired with is there...the drive and determination is there...but whatever “this” is won’t let me contribute somedays. And I’m not so sure about all of you, but I feel worse for the people/company/goals it affects more than anything. We’re a team, and I’m not pulling my weight. Now I really don’t mean this for a pity party, it’s just the biggest struggle that I’ve faced with this (I’m sorry to complain, but part of the point of this page was for me to journal my struggles in hopes it’ll help someone). This isn’t something we ever anticipate happening, and it’s not something I ever foresaw slapping me so young. But it’s life, and it could be worse. For you, it could be worse too. Not everyday is a good one, or a decent one. But I’m still able to do a lot that most people would kill for...and I’m sure you can too. Vent out your frustrations, get it out. And move on to the next day. It’ll get better, even if it does get worse for a bit. Thanks for listening. #aip #aipproblems #autoimmune #brainfog #brainfogdawg #givemeyourbrain
18 1
Current situation. God bless whoever invented electric blankets!! Instant pain relief!! I'm focused on remembering that this is a just a rotten day, not a rotten life. #mindsetiseverything Meeting my water goals and hoping for a better day tomorrow. #myautoimmunetruth #lupus #rheumatoidarthritis #reynauds #adrenalinsufficiency #positivevibes #dontquit #joyjourney #fitlife #invisableillness
23 1
When you have to clear the snow/ice and you have Reynauds. 3 shirts, a sweatshirt, two pair of pants, two pair of socks, long winter coat, hat, gloves and boots. You can go away now, winter ❄️
16 1
SO frustrated. Just typed out a long post, posted it, then found all the text had been wiped. No clue why 😣😒😟 Basically, exhausted and crashing hard after a morning of doctor's appointments and a little shopping in town. Did WAY too much, but have maybe got meds more sorted now (I hope 🤞). Have collected 3 more additional/possible diagnoses to add to my laundry list too - gasteroparesis, hEDS and POTS. What fun (!) Hoping to find enough energy for some restorative yoga later. I desperately need it - I haven't felt this bad in a while. I'm glad I got my usual practice in this morning though. I know I'd feel even worse if I hadn't. Anyone got any tips for restorative yoga for nausea? #frustrated #fibro #fibromyalgia #fibrowarrior #chronicpain #chronicillness #invisibleillness #chronicillnesswarrior #pots #potssyndrome #potsie #edszebrawarrior #EDS #edswarrior #gasteroparesis #spo#spo#spoonieyogatribe #spoonies #spoonie #spoonieyoga #bip#bipolarrder #bipolar #anorexiasurvivor #osteopenia #reynauds #reynaudssyndrome #exhausted #purrtherapy #kittytherapy #furtherapy #cattherapy
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