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Otto<a href="https://social.linux.pizza/@coeusprime" class="u-url mention" rel="nofollow noopener noreferrer" target="_blank">@coeusprime</a> i broke my 5th meta so many times i cant count now. then i had surgery on it because the pain was more than i could live with, then i woke up with <a href="https://mstdn.social/tags/crps" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#crps</a>.crps is a special hell. the nerve is just turned on. all the time. comes off as burning. all consuming everything is lava burning. i cant think about almost anything else anytime, anyday. my foot is on fire.every setback has been accompanied by doctors saying trust me.

Ottosince i read the newest review for <a href="https://mstdn.social/tags/crps" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#crps</a>, i have also been microdosing tadalafil, with my doctors approval.i need it to be microer. it works.

Maggie MaybeI watched that Netflix program about that little girl Maya with <a href="https://zeroes.ca/tags/CRPS" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#CRPS</a> this morning. She got it from a random respiratory infection.Did you guys know that the child protection services department in Florida is privatized??And that wasn’t the only problem, this family had to sue Johns Hopkins for accusing the mother of Munchhausen by proxy.But you guys, Florida took this girl from her family because she had chronic pain and the doctors accused the child of lying. Even Johns Hopkins was claiming that she wouldn’t be having problems after a respiratory infection.If you live in Florida and your child has long Covid BE CAREFUL.Bless this family for putting themselves through even more trauma and suing the people who did this. Hopefully Johns Hopkins and Florida has learned its lesson and they don’t do this to anyone else.<a href="https://zeroes.ca/tags/FL" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#FL</a> <a href="https://zeroes.ca/tags/CPS" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#CPS</a> <a href="https://zeroes.ca/tags/DCYF" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#DCYF</a> <a href="https://zeroes.ca/tags/LongCovid" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#LongCovid</a> <a href="https://zeroes.ca/tags/chronicillness" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#chronicillness</a> <a href="https://zeroes.ca/tags/TakeCareOfMaya" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#TakeCareOfMaya</a>

happygeek :unverified: + :verified: = $0Ever feel like the world is conspiring against you? Phone call from the (very good) NHS pain clinic secretary to let me know that I can't have any more ketamine infusions until the issue with my heart is sorted out as it's a contraindication. I was due the next in three weeks as I have them every month.OK. But.The echocardiogram I was meant to have privately was cancelled by the referring anaesthetist because my arm surgery is in the process of being transferred to the NHS - under the same surgical team. If the pre-surgery assessment ECG shows up anything amiss they will do the echo then.I have no date for the surgery, hence no date for a pore-surgical assessment, hence no Ketamine infusions for, quite possibly, many months.Oh well, it's only excruciating chronic pain - nothing to see here. When it's decided if/if not my heart really is an issue and my pain consultant (if not) can do the infusions again, it will take at least 4-6 weeks to arrange, pushing it even further into the foggy future.Is it too early to start drinking?<a href="https://infosec.exchange/tags/CRPS" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#CRPS</a> <a href="https://infosec.exchange/tags/chronicillness" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#chronicillness</a> <a href="https://infosec.exchange/tags/pain" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#pain</a>

@FourQ ♿<a href="https://mastodon.social/@licked" class="u-url mention" rel="nofollow noopener noreferrer" target="_blank">@licked</a> Sorry to hear that. Mine's my left knee. Searing pain, like being set alight or catching a soldering iron, stabbed and electrocuted. Nobody believes you're in *that* much pain, especially because "you look fine to me". RTC was 2007 but the pain built up and up in the few years afterwards. It continues to get worse each year. Diagnosed with <a href="https://mastodon.online/tags/CRPS" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#CRPS</a> in 2018 In flares, just swinging your legs out of bed causes yelling and screaming. But nobody can believe it because it's so ridiculously bad!

OsteoarthriticAutisticThe 20 ‘most painful' health conditions, according to the NHS <a href="https://www.msn.com/en-gb/health/medical/the-20-most-painful-health-conditions-according-to-the-nhs/ar-AA1kSjMR?cvid=0891b67d26254255841cf61460de207b&ocid=winp2fptaskbarhover&ei=7" rel="nofollow noopener noreferrer" translate="no" target="_blank">https://www.msn.com/en-gb/health/medical/the-20-most-painful-health-conditions-according-to-the-nhs/ar-AA1kSjMR?cvid=0891b67d26254255841cf61460de207b&ocid=winp2fptaskbarhover&ei=7</a><a href="https://disabled.social/tags/Pain" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#Pain</a> <a href="https://disabled.social/tags/NHS" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#NHS</a> <a href="https://disabled.social/tags/Endometriosis" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#Endometriosis</a> <a href="https://disabled.social/tags/SlippedDisc" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#SlippedDisc</a> <a href="https://disabled.social/tags/Appendicitis" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#Appendicitis</a> <a href="https://disabled.social/tags/BrokenBones" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#BrokenBones</a> <a href="https://disabled.social/tags/Shingles" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#Shingles</a> <a href="https://disabled.social/tags/FrozenShoulder" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#FrozenShoulder</a> <a href="https://disabled.social/tags/ClusterHeadaches" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#ClusterHeadaches</a> <a href="https://disabled.social/tags/ComplexRegionalPainSyndrome" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#ComplexRegionalPainSyndrome</a> <a href="https://disabled.social/tags/CRPS" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#CRPS</a> <a href="https://disabled.social/tags/HeartAttack" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#HeartAttack</a> <a href="https://disabled.social/tags/KidneyStones" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#KidneyStones</a> <a href="https://disabled.social/tags/Arthritis" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#Arthritis</a> <a href="https://disabled.social/tags/Gout" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#Gout</a> <a href="https://disabled.social/tags/SickleCellDisease" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#SickleCellDisease</a> <a href="https://disabled.social/tags/SickelCell" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#SickelCell</a> <a href="https://disabled.social/tags/Fibromyalgia" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#Fibromyalgia</a> <a href="https://disabled.social/tags/Migraine" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#Migraine</a> <a href="https://disabled.social/tags/Sciatica" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#Sciatica</a> <a href="https://disabled.social/tags/TrigeminalNeuralgia" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#TrigeminalNeuralgia</a> <a href="https://disabled.social/tags/AcutePancreatitus" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#AcutePancreatitus</a> <a href="https://disabled.social/tags/StomachUlcer" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#StomachUlcer</a> <a href="https://disabled.social/tags/P%C3%A1inAfterSurgery" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#PáinAfterSurgery</a>

Scruffy Dux :krita: :inkscape:People with <a href="https://fosstodon.org/tags/ChronicPain" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#ChronicPain</a> that gets flared by hot weather, what methods have you found to cope, other than the obvious ones like cold showers, ice packs and freeze sprays?Have a week long 30C+ stretch and want to find ways to get through it with less pain.<a href="https://fosstodon.org/tags/NEISvoid" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#NEISvoid</a> <a href="https://fosstodon.org/tags/Fibromyalgia" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#Fibromyalgia</a> <a href="https://fosstodon.org/tags/CRPS" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#CRPS</a>

Domando Al LoboEl lunes pasado fue el <a href="https://mastodon.social/tags/DiaMundial" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#DiaMundial</a> del Síndrome de <a href="https://mastodon.social/tags/Sudeck" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#Sudeck</a> o Distrofia Regional Compleja. Mi compañera Noemí se pasó por "La Cueva" para contarnos brevemente en qué consiste. La visibilidad de enfermedades es eso: aprender y acompañar.#278 Síndrome de Dolor Regional Complejo por @Tio_Sudeck 🐺 <a href="https://domandoallobo.blogspot.com/2018/11/278-sindrome-de-dolor-regional-complejo.html" rel="nofollow noopener noreferrer" translate="no" target="_blank">https://domandoallobo.blogspot.com/2018/11/278-sindrome-de-dolor-regional-complejo.html</a> <a href="https://mastodon.social/tags/blog" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#blog</a> <a href="https://mastodon.social/tags/SDRC" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#SDRC</a> <a href="https://mastodon.social/tags/DolorCronico" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#DolorCronico</a> <a href="https://mastodon.social/tags/dolor" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#dolor</a> <a href="https://mastodon.social/tags/EnfermedadesRaras" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#EnfermedadesRaras</a> <a href="https://mastodon.social/tags/EERR" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#EERR</a> <a href="https://mastodon.social/tags/CRPS" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#CRPS</a> <a href="https://mastodon.social/tags/CPRSOrangeDay" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#CPRSOrangeDay</a> <a href="https://mastodon.social/tags/MovilidadReducida" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#MovilidadReducida</a> <a href="https://mastodon.social/tags/Blogger" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#Blogger</a> <a href="https://mastodon.social/tags/GuestBlogger" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#GuestBlogger</a> <a href="https://mastodon.social/tags/mastoblog" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#mastoblog</a> <a href="https://mastodon.social/tags/Mastoblogger" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#Mastoblogger</a>

CryptoNaughtDOA<a href="https://mastodon.social/tags/crps" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#crps</a> <a href="https://mastodon.social/tags/celestial" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#celestial</a>

katch wreck"a single SNP in each of the genes ANO10, P2RX7, PRKAG1 and SLC12A9 was associated with developing chronic Complex regional <a href="https://mastodon.social/tags/pain" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#pain</a> <a href="https://mastodon.social/tags/syndrome" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#syndrome</a> type 1 (CRPS-1), with more males than females expressing these rare alleles. Our work suggests the possibility that a permissive genetic background is an important factor in the development of CRPS-1."<a href="https://jmg.bmj.com/content/early/2023/09/15/jmg-2023-109236" rel="nofollow noopener noreferrer" translate="no" target="_blank">https://jmg.bmj.com/content/early/2023/09/15/jmg-2023-109236</a><a href="https://mastodon.social/tags/CRPS" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#CRPS</a> <a href="https://mastodon.social/tags/chronicPain" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#chronicPain</a>

Nannyogg63Reasons I still <a href="https://mastodon.social/tags/WearAMask" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#WearAMask</a>: I’m asthmatic and my lungs have sustained damage from multiple lung infections and years of smoking (quit 20 years ago but still); I have <a href="https://mastodon.social/tags/mecfs" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#mecfs</a> and <a href="https://mastodon.social/tags/crps" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#crps</a> which are both now suspected to be post viral and my chances of getting long Covid are increased because of it; I’m autoimmune so who knows if the vaccines are actually working for me; our boosters are now out of date and no idea if we will be able to get the fall one. Vulnerable.

Nannyogg63Managing multiple <a href="https://mastodon.social/tags/chronicillness" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#chronicillness</a> is no joke. What helps one can trigger another. Finding a happy medium where I can live with the symptoms is a never ending juggling act that depends on my activity levels, diet, stress levels, the weather, and random unseen variables that pounce when least expected. <a href="https://mastodon.social/tags/CRPS" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#CRPS</a> <a href="https://mastodon.social/tags/MECFS" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#MECFS</a>

kampfzwergIhr Lieben 😊gibt es hier in den Weiten des „Universums“ Menschen die ebenfalls an CRPS/Morbus Sudeck erkrankt sind? Ich selbst bin seit 7 Jahren erkrankt, Typ II, rechte Hand, mittlerweile bis zum Ellenbogen und seit Oktober 2022 linke Hand.Über einen Austausch/eure Erfahrungen würde ich mich freuen. <a href="https://sueden.social/tags/CRPS" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#CRPS</a> <a href="https://sueden.social/tags/MorbusSudeck" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#MorbusSudeck</a> <a href="https://sueden.social/tags/Pain" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#Pain</a>Über boost wäre ich dankbar.

ClaireI got <a href="https://disabled.social/tags/acupuncture" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#acupuncture</a> for my <a href="https://disabled.social/tags/CRPS" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#CRPS</a> yesterday and 1. I have tremendous pain relief (yay!) 2. I am completely exhausted (also kinda yay!). 3. I slept all night for the first time in years.

OsteoarthriticAutistic‘I’m being burnt alive Mum’: Young woman diagnosed with ‘suicide disease’ faces race against time | The Independent <a href="https://www.independent.co.uk/news/health/suicide-disease-crps-pain-gofundme-b2371384.html" rel="nofollow noopener noreferrer" target="_blank">https://www.independent.co.uk/news/health/suicide-disease-crps-pain-gofundme-b2371384.html</a><a href="https://disabled.social/tags/CRPS" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#CRPS</a> <a href="https://disabled.social/tags/SuicideDisease" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#SuicideDisease</a> <a href="https://disabled.social/tags/ComplexRegionalPainSyndrome" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#ComplexRegionalPainSyndrome</a>

Nannyogg63Venturing into the world of Mastodon while the bird site self-destructs. I’m a retired/disabled person with <a href="https://mastodon.social/tags/crps" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#crps</a> and <a href="https://mastodon.social/tags/mecfs" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#mecfs</a> as a result of an accident in 2016. I am mostly housebound but can manage short excursions with sufficient planning and the assistance of my amazing spouse . Advocate for UBI, housing supports, renewable energy solutions, equity for all. Still masking and taking <a href="https://mastodon.social/tags/covid" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#covid</a> seriously. 😷

Jason (no more, no less)<a href="https://mastodon.social/@licked" class="u-url mention" rel="nofollow noopener noreferrer" target="_blank">@licked</a> like u, I have <a href="https://mstdn.party/tags/CRPS" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#CRPS</a>. 1 thing that aggravates me is when non disabled ppl complain about automated and/or driverless cars.For some of us, it'd be our ONLY way to have the freedom to "drive" (read: go) somewhere (assuming we could afgord such a vehicle, I can't bit principle stands still) as buses & trains don't service everywhere (nearest bus or train to me? 50miles away, to far for an Uber)

OpacusAnyone else out there with <a href="https://ohai.social/tags/adhd" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#adhd</a> that continue to struggle with low energy days even when on medication? My dark days are fewer, and farther apart, but they still hit me like a brick. Especially after "high output" weeks with a lot of tasks on the plate. Seems like my reward system is too broken to benefit fully from medication. I guess having <a href="https://ohai.social/tags/crps" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#crps</a> and <a href="https://ohai.social/tags/chronicpain" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#chronicpain</a> on top doesn’t help. <a href="https://ohai.social/tags/dopamine" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#dopamine</a> <a href="https://ohai.social/tags/add" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#add</a> <a href="https://ohai.social/tags/procastination" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#procastination</a> <a href="https://ohai.social/tags/fatigue" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#fatigue</a>

Heather HobsonI am a mother of 2 absolutely wonderful full grown adults. Unfortunately they had an undiagnosed autistic mother who thought that it would be selfish to be in therapy so I had no idea how to break the cycle of generational trauma that I caused my children. I have gone through some therapy at this point and am still understanding what I did and trying to make up for it to my kids! <a href="https://mastodon.social/tags/actuallyautistic" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#actuallyautistic</a> <a href="https://mastodon.social/tags/autistic" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#autistic</a> <a href="https://mastodon.social/tags/learning" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#learning</a> <a href="https://mastodon.social/tags/CRPS" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#CRPS</a>

dystobot[Automatic repost <a href="https://twitter.com/dystobot/status/1659611164911845406" target="_blank" rel="nofollow noopener noreferrer" translate="no">https://twitter.com/dystobot/status/1659611164911845406</a>]RT @MommaJacy: When you have <a href="https://med-mastodon.com/tags/FMCFS" class="mention hashtag" rel="tag">#FMCFS</a> <a href="https://med-mastodon.com/tags/ChronicSevereMigraines" class="mention hashtag" rel="tag">#ChronicSevereMigraines</a> <a href="https://med-mastodon.com/tags/Dystonia" class="mention hashtag" rel="tag">#Dystonia</a> <a href="https://med-mastodon.com/tags/Dystonia" class="mention hashtag" rel="tag">#Dystonia</a> <a href="https://med-mastodon.com/tags/CRPS" class="mention hashtag" rel="tag">#CRPS</a> and a lot of autoimmune diseases....somehow, it's all in your head. Yes, my migraines have been deemed autoimmune. <a href="https://t.co/n5MntdKRv5" target="_blank" rel="nofollow noopener noreferrer" translate="no">https://t.co/n5MntdKRv5</a>

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