CRPS talk & support @CRPSTalkSupport
CRPS talk & support UK is a friendly place for those living with (or caring for someone with) CRPS to chat to others about the condition and exchange advice. crpstalkandsupportuk.wordpress.com UK Joined August 2017-
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Thought of the day With CRPS you are constantly having to factor in how many rest days you will need to be able to go out next week and how many recovery days you will need afterwards. • • • #BNightsCRPS #CRPS #CRPSawareness #CRPSwarrior #CRPSsupport #chronicpain #CRPSisReal
Good. People who don’t need PIP have no idea what it’s like to need PIP - or to fear that lifeline being removed. Disability benefits are vital and benefit us all. Disabled people don’t store it up - we spend it, often locally. Fingers crossed that sanity and decency prevail.
Good. People who don’t need PIP have no idea what it’s like to need PIP - or to fear that lifeline being removed. Disability benefits are vital and benefit us all. Disabled people don’t store it up - we spend it, often locally. Fingers crossed that sanity and decency prevail.
Agree with this. And would like to say that I’m pretty sure both government, DWP etc know it. Life with disability if any kind isn’t easy. Fraudulent PIP claims are basically zero. So why are we being targeted?
Agree with this. And would like to say that I’m pretty sure both government, DWP etc know it. Life with disability if any kind isn’t easy. Fraudulent PIP claims are basically zero. So why are we being targeted?
Spot on
Sadly, this is true In my opinion
So so true… Chronic illnesses - esp. ‘invisible’ ones like CRPS are so misunderstood. Having a chronic illness isn’t like how you feel when you are sick for a week or two off work We’re exhausted, in 24/7 pain, worried, it’s affected our whole life & relationships & who we are
So so true… Chronic illnesses - esp. ‘invisible’ ones like CRPS are so misunderstood. Having a chronic illness isn’t like how you feel when you are sick for a week or two off work We’re exhausted, in 24/7 pain, worried, it’s affected our whole life & relationships & who we are
Please do this. Wear a mask. It’s such a small thing but could literally save a life - including yours. Thank you
Please do this. Wear a mask. It’s such a small thing but could literally save a life - including yours. Thank you
About time. The DWP has been awful to the sick and disabled for many years…and the ‘Fitness for Work’ test is so flawed it’s almost laughable…except it’s not funny. We always hope for better but keep being disappointed - but at least they’re asking the question now. IMO
About time. The DWP has been awful to the sick and disabled for many years…and the ‘Fitness for Work’ test is so flawed it’s almost laughable…except it’s not funny. We always hope for better but keep being disappointed - but at least they’re asking the question now. IMO
This. THIS. I don’t know about you, but I DREAM of being able to scrub the floors, trawl round the supermarket or dig my garden myself in January. Even scrubbing round the u-bend without snapping in half would be welcome right now. People in fairly good health, we envy you.
This. THIS. I don’t know about you, but I DREAM of being able to scrub the floors, trawl round the supermarket or dig my garden myself in January. Even scrubbing round the u-bend without snapping in half would be welcome right now. People in fairly good health, we envy you.
This 👇
Chronic illness is not always visible. You don’t see the brain fog. You don’t see the tachycardia so bad you can’t get up, the crushing fatigue. You don’t see the debilitating pain taken with each step. The dizziness we experience when we stand. What else don’t people see?
Absolutely this 👇. Go easy on yourself. You cannot do everything - so pick your battles wisely and don’t try to please everyone. Take care of you and those you love, ask for help, and expect others to pitch in. Don’t cause yourself more pain 🎄 Remember - you need to rest too!
Absolutely this 👇. Go easy on yourself. You cannot do everything - so pick your battles wisely and don’t try to please everyone. Take care of you and those you love, ask for help, and expect others to pitch in. Don’t cause yourself more pain 🎄 Remember - you need to rest too!
This is one of the truest things I’ve ever read. And it hits home hard for all of us with CRPS. Because this is exactly how the world works… You’re not alone out there. We get it. Keep going 🤗
SPOT ON
No surprise to those of us with CRPS. Ice is the absolute worst thing we can use on our skin. For many of us, the instructions to use ice to reduce swelling made our undiagnosed CRPS far worse than it would have been. It’s time medicine caught up with time. Rethink it all. IMO
No surprise to those of us with CRPS. Ice is the absolute worst thing we can use on our skin. For many of us, the instructions to use ice to reduce swelling made our undiagnosed CRPS far worse than it would have been. It’s time medicine caught up with time. Rethink it all. IMO
A really interesting thread. What else would you add?
Truth. We get a kickback from when we exert ourselves to do that bit too much more than our bodies can take… The consequences are a pain flare and the physical effects of whatever we did. Acting ‘normal’ for a while is never without a nasty sting in the tail. Be kind to yourself
Truth. We get a kickback from when we exert ourselves to do that bit too much more than our bodies can take… The consequences are a pain flare and the physical effects of whatever we did. Acting ‘normal’ for a while is never without a nasty sting in the tail. Be kind to yourself
Thought of the day My pain is still there when I'm smiling, when I'm laughing, when I'm not talking about it and when I'm socialising. #CRPS #chronicpain #chronicillness.
“Healthy people will assume that the #fatigue felt by #chronicillness sufferers is like their own – tiredness... they are able to carry on when they are tired – so why cant you?” I’m not Lazy, I’m Fatigued buff.ly/42GJOIF @me_illness #spoonie #chronicpain
Eric Conklin @EricConk32
751 Followers 3K Following Writer & researcher exploring how personal experience shapes belief Survey on belief + emotion: https://t.co/4mS7C3NInU
Walkingonfire79 @Odaxelagnia79
22 Followers 174 Following 🧡🧡🧡 I’m a CRPS warrior trying to raise awareness for this awful disease! come share your story in the Reddit community we created search r/CRPSwarriorsUNITE
森田 タケル @TakeruMoritajp
58 Followers 240 Following 誤診の経験から『良い医者の見極め方』著者。人をつなぐ作家でありたい。 『良い医者の見極め方』https://t.co/rm7bZTozD6
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よみぃ☆ CRPS @itainoucyuhe_go
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GeekyHistoryNerdKatie... @GeekyKatie94
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justin rutter @rutter3939
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CRPS/RSD Angel of Hop... @unrealphanta5m
61 Followers 568 Following Formerly the CRPSwarriorNZ; disabled mum, artist, Twitch streamer and disability advocate. I want to spread hope, awareness and build a supportive community
SARA ADAMS: BS Psycho... @AdamsSara8000
1K Followers 3K Following -I am the ADHD/CRPS - moderator for THE PSYCH NERD -professional NOTICER -moderator for #TheMindsBehindTrueCrime -Behavior Analyst
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Katherine Porter @Katherine818485
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strongerthancrps @strongrthancrps
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Paula Comedy @hoopamama
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Lindsey Seddon @LindseySeddon
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Sarahp @Sarahlouh1978
1K Followers 4K Following quirky jewellery maker, ballymaloe grad, live in plymouth, youth in Ahascragh. complex disability/t2 Diabetes sufferer & bunny lady, no DM’s, views my own
あっすー👤CRPS/... @assu2_22
32 Followers 40 Following 2018,9月事故で左膝半月板損傷をきっかけに #CRPS 発症 23'3月 #メドトロニック 社の #SCS を入れました。#脊髄刺激療法 既に入れてる方や慢性の痛みを抱えている方、それ何?という方もお声がけいただければと思います。
CRPS Awareness @CRPS_Awarness
352 Followers 1K Following CRPS RSD Warrior and I love designing notebooks and T-shirts. If you need one I can get it for you from Amazon
Heather Marie @HMarie2819
24 Followers 139 Following 🧡CRPS WARRIOR🧡 Stay Weird and Love Who You Are 🖤 "A day without Laughter, is a day Wasted" - Charlie Chaplin
TheMeaningofPain @tmopain
2K Followers 1K Following Expert on living with (my) persistent pain. Learning what science has to say about it. Intrigued by education/communication strategies that bridge the two.
Julia @julia_with_me
3K Followers 2K Following
Sarah Cummins @SarahCCummins
735 Followers 1K Following Award winning Educational consultant & coach. Montessori trained(AMI), MA, BEd, NPQH & PGCHE. L6 ITE coordinator & Senior lecturer at Leeds Trinity University
FT Chronic Pain Solic... @FT_Chronic_Pain
36 Followers 107 Following A specialist personal injury law firm with expertise in chronic pain. #CRPS #Fibromyalgia Anne Felmingham & Paul Turner Tweets/RTs are not medical advice
Kelly Peek @KellyPeek104
240 Followers 828 Following Long time suffer of CRPS and Dystonia Trying to live my best life to share and teach people more about the painful disorder
Jason (just me; no mo... @sanjaro1996
2K Followers 3K Following #CRPS | #Christian | #Mariners | Amateur MLB Analyst | #Seawolves | #Hispanic | RT ≠ endorsement | SubStack & Social Links on linktree below |
Joaquim Streicher @JoaquimStreichr
132 Followers 491 Following MSc, Research Assistant at Cambridge Consciousness and Cognition Lab and Neurophysiology of Consciousness and Critical Care Lab
CRPS SIG @CRPS_SIG
312 Followers 284 Following Special interest group of @IASPpain advancing research and knowledge translation for Complex Regional Pain Syndrome. #Interdisciplinary #Collaboration
The Doctor Is In ✌�... @SandiFitchHutt
2K Followers 2K Following I love my kids, dogs, USC, Yankees, and NY Giants. Alt-Middle. California expat. 3 time USC alum living with CRPS. Fight on! ♥️💛✌🏻🇺🇸
☮️Save Wildlife�... @sandyherr2
1K Followers 2K Following PROUD To Be a DEMOCRAT SAVE 🇺🇸 VOTE BLUE SAVE🇺🇸VOTE BIDEN #Resistance
Clara Layfield @ClaraLayfield16
36 Followers 304 Following Chronic Illnesses x14 - Brain Surgery Warrior • Drag Racer• Aspiring Peds Neurosurgeon! - Farm Kid SK🌾 JPCH Advocate!💛 - Usask BioMedSci📗
Michelle Tilley @Michell25152265
20 Followers 292 Following
Tiffy Rose @TiffyRose3
3 Followers 15 Following
Scrambler Therapy NJ ... @CalmareNJUSA
2K Followers 942 Following We're reducing & eliminating treatment-resistant chronic nerve pain. No drugs | Non-invasive | No side effects #chronicpain #scramblertherapy #painrelief
SomatosensPainRehab @eNewsSomatosens
68 Followers 137 Following The official e-Journal of the Somatosensory Rehabilitation of #Pain Network - https://t.co/NF2oIUzvBP #NeuroPainRehab
tom keeble @tomkeeble8
17 Followers 356 Following crps bipolar disabled West ham forever.. abuse survivor ..fragile.. bit nutty miss kids ptsd panic attacks agoraphobia.hopefulex soldier scared to go out
Holistic Centered Tre... @HolisticCenter2
199 Followers 841 Following Holistic Centered Treatment created by a CRPS Survivor - Dr. Traci Patterson. Premiere program for CRPS. #CRPSexpert #CRPStreatment #CRPSremission #CRPSsurvivor
Christine Steffen @Christi17059754
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さくら｜クリエ... @reproject_nuku
253 Followers 245 Following 慢性疼痛に関する支援を目指しています🌱〈関心〉カメラ/組織づくり/パラスポーツ全般/avantgardey/心理学 〈活動〉Reプロジェクト｜痛みのメディア 『ペインと。』 代表 @pain_sprt_media 〈仕事〉デザイン・インスタ設計&サポート・心理カウンセリング 〈相性◎〉医療者/挑戦するひと
aledlys @CFlily
4 Followers 702 Following
Shazza @luckypunk2010
68 Followers 2K Following
Ross @Rossco006
2K Followers 982 Following #CRPS & #Osteoarthritis fighter as well as advocate, writer, and speaker. Avid photographer. Contributor to the cause with @CureArthritis and @WegoHealth.
MOM Grandma & Advocat... @letyoulive2
236 Followers 1K Following #OPIODCRISIS #dontlettheirdeathbeinvain #stopthemadness #itsnotunintendedanymore
🌈JO @JOFIGHTSCRPS
196 Followers 51 Following I’m battling #rsd As long as i have it I refuse to lay down. #peace #love #mindfulness #advocate #dpp
Anita ❌ cycles ♿ @BeSustainable2
598 Followers 398 Following Sustainability&Adaptation; Pedestrian/Sustainable Transport; Geek; NETs Cancer host(age); Life's a sustainability experiment! Wife, mother, dog lover.
CRPS Support Group WA @crps_s
46 Followers 19 Following CRPS Support Group South Sound You are not alone! Our Mission - To provide support for each other and together, we work to spread awareness to everyone else.
Jo's Odd Shoes @odd_shoes
89 Followers 257 Following If you only wear half a pair of shoes we are the place for you. Especially for Amputees, or sufferers of CRPS, Dystonia, Alloydnia (& other medical conditions)
Chronically.Sarcastic @alphaGeekOne
428 Followers 2K Following A lonely disabled guy w/ #PTSD & #CRPS T2 ‘Full Body’ and 99.9% bedridden. Always looking for weird & wonderful stuff to feed my head. Proud #Atheist & #Spoonie
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611 Followers 3K Following advocating for autism awareness, domestic abuse, disability equality,and acceptance for all,mostly I’m a mother. My kids are my everything.
Chronic Disease Coali... @ChronicRights
12K Followers 495 Following Leading non-profit #health #advocacy for funding research and defending #ChronicRights - fighting for all affected by #chronicdisease RTs not endorsements
Katherine Wells @katethejuggler
1K Followers 2K Following Fan of cheese, dogs, tea, honesty, books, sunsets & hot air balloons. Mum, partner, dog owner, librarian, event organiser, business owner: juggler.
Ellie Simmonds @EllieSimmonds1
94K Followers 565 Following Can mostly be found in a swimming pool. Baking enthusiast, insatiable traveller & ocean lover. Paralympian: 08, 12, 16, 20. Enquiries: @NickHartwell1.
S.A. Smith💙 @SASmithOfficial
5K Followers 4K Following Energy Alchemist, Cosmic Intuitive, Energy Alignment #Starsoul #Lightworker #Ascension #Angelic
Burning Nights CRPS @BNightsCRPS
11K Followers 10K Following Burning Nights CRPS Support is a UK charity raising awareness & supporting all those affected by Complex Regional Pain Syndrome (CRPS). RT=Not Endorsement
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898 Followers 141 Following 49ers and Swindon Town supporter. Engineer. #mecfs has got in the way of having a life
Singlerheum ♿ @DeniseNolson
2K Followers 836 Following Slightly shocked but delighted new Town Councillor for Slade Ward, Stroud 😊🌿🪻🦋
Fibro Jedi @FibroJedi
5K Followers 814 Following #LOTRO & #FFXIV Gamer 😣 Fibro = #Fibromyalgia ☕ https://t.co/Ir8N4dMqYp 🦣 https://t.co/TSk72ztWoI 🦋 https://t.co/BF3sAb1p7U
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5K Followers 4K Following Mindfully capturing & sharing little seasonal joys in nature. Currently #JoyInSpring 🌸🌼 Mindfulness & Meditation Practitioner #pwME #Spoonie
For Grace: Women In P... @forgrace
10K Followers 2K Following For Grace promotes better care and wellness for women in chronic pain. Catch the live stream of our groundbreaking 2023 Women In Pain Conference @ https://t.co/cuokTN2Hy4
Women In Pain Conf @WIPConference
4K Followers 2K Following Welcome to For Grace's Women In Pain Conference site. Catch the 11/17 livestream of our ground-breaking 2023 Women In Pain Conference @ https://t.co/q92ikf1JbM
Mark Hayward @WellnessRoady
6K Followers 6K Following #WellnessRoady©️ 🎩™🕊️ Independent #WellnessConsultant #HelpingPeople #EnJoY a #Healthy #LifeStyle | @SpectreEnergy⚡ | 🛡 @ArcLight_Cares 🏹
The Chronic Theory �... @ZebraOrphans
4K Followers 790 Following #LXP #EDS #POTS #Gastroparesis #TMJ
Gemma Collis PLY @GemmaCollis
3K Followers 3K Following 4x Paralympian. World Cup Winner. 23x World Cup Medallist. 2024 European Silver Medallist. @BBCSport Journalist. Wheelchair Fencing Athlete Council Chair.
Marcy Stiebs @MarcyCRPS
1K Followers 2K Following I am a chronic pain patient I suffer with RSD/CRPS and migraines. I advocate for chronic pain patients. I am also a Pampered Chef Consultant.
Dave Marcus @davemarcus2018
639 Followers 2K Following CRPS sufferer (plus other ills). I love clean fresh bed linen. also madly in love with #subbuteo. #LFC #YNWA
SJ Gold @GoldJFJKD
414 Followers 1K Following Academic Administrator, Professor, Martial Artist, Disability Activist, Musician. He/Him/His
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2K Followers 2K Following 💋 Model. Entrepreneur. Philanthropist. Humanitarian. Writer. Supporter of @BeatSCAD UK, patient health, & #purplefriday. Made in the UK living overseas
jennifer @pneprincess
737 Followers 3K Following Puggy obsessed Prestonian 🤪🤪🤪🤪 Saints Alumni 👩🎓 🏴 #CRPS warrior 🧡🧡🧡🧡
VERITAS @VERITAS_2U
2K Followers 763 Following MADE IN AMERICA! RSD Warrior, Medic, Advocate, Familia, Military BlueBlood, integral. WX, Swimmer, Sports, Music, Justice, the American Way. NO EXCUSES. FAFO!
Riki (Spiffy) @spiffyriki
95 Followers 883 Following 🌈 Introverted AF. Disney freak. Bi. Packers & Brewers fan 💚🏈💛⚾💙 Love animals, photography, & ice cream. Not nearly as funny to others as I am to myself. 🦖
SeeChangeHypno @SeeChangeHypno
235 Followers 661 Following My name is Tamara and I'm a clinical Solution Focused hypnotherapist in Leeds city centre. Get in touch now and let me help you... Be Your Best!
@malubert18 @malubert18
61 Followers 85 Following Mom, Wife, DPM for 19 years until CRPS. Striving to understand, teach, & help others who also have CRPS. Working in healthcare again, just not providing it.
Global Rheumatology @GlobalRheumato
4K Followers 3K Following Online community passionate about #rheumatology. We provide the latest news, interesting case studies and important research findings. Follow us and engage!
BloggerBarbara @BloggerBar
2K Followers 2K Following
CRPS awareness @makeawareCRPS
2K Followers 29 Following Ran by @JodieVolunteers // 22 // CRPS warrior since 14 years old // Affected in the right foot and internal organs // Wishing every warrior a low pain day
CRPS Warrior @CRPS_RSD_UNITED
2K Followers 321 Following A place for people with #CRPS & #chronicpain #pain to talk and plan events to advocate Awareness & education! #ourjourney
CRPS Documentary @CRPSDocumentary
2K Followers 354 Following Why do the doctors still say they don't know what it is? It's manageable with help! Making a Documentary about #CRPS and #RSD. [email protected]
RSD/CRPS Doesn't Own ... @RCDOM_Support
2K Followers 22 Following We are a Support,Awareness,& Research Organization dealing with the horrid disease that is RSD/CRPS. We don't want to give up and neither should you!
CRPS Everyones Enemy @RSDBeGone
2K Followers 752 Following Daughter of RSD survivor; now in round 6 (@Naanad is my volunteer/social life outside #CRPS and @FLJDK is my work life)
RSDSA @RSDSA
5K Followers 951 Following RSDSA's mission is to provide support, education, and hope to everyone affected by #CRPS while we drive research to develop better treatment and a cure.
RSDS/CRPS News @RSDS_CRPS_NEWS
4K Followers 93 Following News & information for and about people with RSD Reflex Sympathetic Dystrophy Syndrome - CRPS Complex Regional Pain Syndrome - [email protected]
Dr. Hilary Jones MBE @DrHilaryJones
85K Followers 484 Following Dr Hilary unfortunately cannot answer any medical enquiries, please contact your GP. For all management & publicity contact via https://t.co/qmxUIZUrj1
The Doctor Is In ✌�... @SandiFitchHutt
2K Followers 2K Following I love my kids, dogs, USC, Yankees, and NY Giants. Alt-Middle. California expat. 3 time USC alum living with CRPS. Fight on! ♥️💛✌🏻🇺🇸
Cherylee Houston @cheryleehouston
38K Followers 2K Following Write to your MP to vote against the welfare cuts using our template generator at https://t.co/mx4Oza8CKY Help stop horrific cuts!
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