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Pain? P A I N? PAIN!PAIN!PAIN!PAIN?
by MistyMagic
Last post
 5 hours ago
...See more February brings the start of the Disability Support Community focus on Pain! We all get pain. Some of us get pain sometimes. Some of us get pain most of the time. Some of us get pain all of the time! So whatever your thoughts on pain, or level of daily pain, or threshold of pain (and we will talk more about that later on) read on and let's find out more about pain together! This will be part of the 'Pain Cafe' series that will include open chats in the 'Disability Support' [https://www.7cups.com/chat/?c=2_b0dd39dc0ad3f07akKj6u2oym2BA4i8pC6eGFA] room, as well as hosted discussions (hosts wanted! message me!) [https://www.7cups.com/@MistyMagic] that will be advertised in this thread so please reply if you want to be tagged about future posts, and discussions in this series. The 'Pain Cafe’ is somewhere informal that is a safe space for us to learn and share together. We can come together and have a coffee, tea, or juice, and choose our favourite cake or cookie too! With the bonus of no calories or crumbs! First let's spend a little time discussing “What Is Pain?” Pain is weird, right? It’s both a physical and emotional experience, sometimes sharp and immediate, other times dull and lingering. It’s your body’s way of saying, “Hey, something’s not right,” whether that’s a stubbed toe, a heartbreak, or even stress manifesting as a headache. But pain isn’t just about suffering—it’s also a teacher. It tells you where your limits are, forces you to pay attention, and even helps you grow. Ever notice how people who’ve been through tough times often have a deeper sense of empathy? Pain shapes you, for better or worse. And then there’s the strange part—how pain can sometimes be subjective. Two people can experience the same injury but react completely differently. Some folks push through insane amounts of pain (think athletes or soldiers), while others feel every tiny discomfort intensely. It’s all about perception, past experiences, and even brain chemistry. Oh, and let’s not forget the bizarre cases where pain doesn’t work the way it’s “supposed to.” Like phantom limb pain - when someone loses a limb but still feels sensations where it used to be. Or chronic pain, which can be where your body keeps sounding the alarm even when there’s no real injury. Or chronic pain, long-term pain from constant re-injury or inflammation. At the end of the day, pain is just part of being human. It sucks, sure, but it also reminds us we’re alive. If pain is a warning signal, listen to it and allow healing. If pain is chronic or misleading, it can be important to retrain the brain and nervous system to stop overreacting. Learning to recognize the difference allows for better pain management and quality of life. Pain is a complex sensory and emotional experience that signals potential or actual harm to the body. It’s essentially the body's warning system, alerting you to injury, illness, or danger. Pain can be categorized in different ways, such as: * Acute pain – Short-term, typically caused by injury or illness (e.g., a cut, burn, or broken bone). * Chronic pain – Long-lasting pain (lasting more than three months) that can sometimes persist even after the initial injury has healed (e.g., arthritis, nerve damage). * Neuropathic pain – Pain caused by nerve damage or dysfunction rather than an obvious physical injury (e.g., sciatica, phantom limb pain). How Does the Brain Perceive Pain? The perception of pain involves a complex process that includes sensory input, nerve signaling, and brain interpretation. Here’s how it works: * Detection (Nociception): Specialized nerve endings called nociceptors detect harmful stimuli (heat, pressure, chemicals, or injury). These receptors are located in the skin, muscles, joints, and organs. * Transmission: The nociceptors send electrical signals through sensory neurons to the spinal cord. From there, the signals travel up to the brainstem and thalamus, which act as relay centres. * Processing in the Brain: The thalamus sends the pain signals to different brain regions: * Somatosensory Cortex: Determines the location and intensity of pain. * Limbic System: Processes the emotional aspects of pain. * Prefrontal Cortex: Helps with decision-making and how to react to the pain. Pain Perception: Your brain interprets the signals as pain and decides how to respond—whether to move away, seek help, or endure it (we all know that feeling don't we?) Modulation: The brain can amplify or suppress pain using neurotransmitters like endorphins (natural painkillers) and serotonin. This explains why adrenaline can make you temporarily "ignore" pain in emergencies. Why Does Pain Feel Different for Everyone? Pain perception varies based on: * Genetics & Biology (Some people have a higher pain threshold). * Psychological State (Stress and anxiety can heighten pain). * Past Experiences (Chronic pain sufferers often have altered nerve responses). Pain isn’t just a physical sensation—it’s also influenced by mood, expectations, and memory. This is why two people can have the same injury but experience pain differently. Over to you! Q. What do you think— is pain a necessary evil, a friend, or just a glitch in evolution? Q. Do you have pain? How would you describe it? Sharp, Hot? Stabbing? Dull? Share with us. Q. Tag someone that you think might be interested in joining in with our 'Pain Cafe' and the series of forum posts here too!
MistyMagic profile picture
Boom! or Bust! All about pacing . . .
by MistyMagic
Last post
 5 hours ago
...See more This post is part of our new series on  ⚡P A I N !💥 All About. . . Boom!⬆️ Bust 🔽 and Pacing 🟰 The concept of "boom-bust" and “pacing” particularly in the context of disabilities, refers to a pattern of energy expenditure characterized by alternating periods of high activity or productivity ("boom") and subsequent periods of low energy, exhaustion, or rest ("bust"). This approach is often employed by individuals with chronic illnesses, disabilities, or conditions that cause fluctuations in energy levels, such as chronic fatigue syndrome, fibromyalgia, or certain types of disabilities affecting energy levels. How often have you started out at the beginning of an activity or project full of energy (Boom) racing along only to begin feeling tired, but still you carry on because you don’t want to stop, or you just want to finish what you are doing, and then the next day you are so very tired and in pain or exhausted and cannot do anything (Busted) and the recovery takes a few days or even longer? Here's a breakdown of the “boom-bust” and “pacing” approach and its implications for individuals with disabilities: Understanding Energy Levels: Boom-bust pacing recognizes that individuals with disabilities often have limited energy reserves, which can fluctuate from day to day or even within the same day. It emphasizes the importance of being attuned to one's own energy levels and learning to manage them effectively. Managing Activities: Rather than trying to maintain a constant level of activity throughout the day, boom-bust pacing involves identifying periods of higher energy (boom) and using them for more demanding tasks or activities, while conserving energy during periods of lower energy (bust) through rest or less demanding activities. Prioritizing Tasks: Individuals practicing boom-bust pacing often prioritize tasks based on their energy levels. Important or demanding tasks are tackled during periods of higher energy, while less critical tasks may be deferred to periods of lower energy. Ask yourself these questions and think about your answers, then jot them down so that you have a list of your priorities, you can add them in your reply to this post. * What is important? - read all the points below before deciding! * What MUST I do? * What do I want to do? * What do others want me to do? * What am I expected to do? (may include deadlines) * What can I do? Avoiding Overexertion: By pacing activities and balancing periods of activity with rest, individuals can reduce the risk of overexertion, which can exacerbate symptoms or lead to "crashes" where energy levels plummet (bust), sometimes for an extended period as the recovery needed after a “boom” can be extensive and disproportionate to the gain. Examples:  You may want to finish weeding a flower border and do it all in one afternoon, the flower border looks great but you end up exhausted in bed for 3 days. If you had spread it over 2 afternoons then you would not end up exhausted. You have an important exam next week, so you stay up all night studying. The next day you cannot get out of bed because of the body aches and exhaustion. If you had split the studying into short periods then you would not have crashed so badly and could have revised for a few hours every day.  Remember to STOP BEFORE the pain is too bad or STOP BEFORE you feel exhausted, that way the rebound to recovery is faster, and smoother, and repeatable. Take a look at https://www.pomodorotechnique.com/ [https://www.pomodorotechnique.com/]  splitting studying or any task into shorter periods. The original technique has six steps: * Decide on the task to be done. * Set the Pomodoro timer (typically for 25 minutes). * Work on the task. * End work when the timer rings and take a short break (typically 5–10 minutes). * Go back to Step 2 and repeat until you complete four pomodoros. * After four pomodoros are done, take a long break (typically 20 to 30 minutes) instead of a short break. Once the long break is finished, return to step 2. ( a pomodoro is an interval of work time). Also the Spoon Theory [https://www.7cups.com/forum/DisabilitySupport_47/ArticlesResourcesConditionSpecificInformation_458/SpooniesandDropitlikeitsPOTSshirts_20186/] 🥄🥄🥄🥄🥄🥄 and Here [https://www.7cups.com/forum/disabilities/ArticlesResourcesConditionSpecificInformation_458/BoomorBustAllaboutpacing_327034/] Flexibility and Adaptability: Boom-bust pacing requires flexibility and adaptability, as energy levels can vary unpredictably. It's important for individuals to listen to their bodies, adjust their plans as needed, and never feel guilty for needing to rest or modify their activities. Communication and Advocacy: In work or social settings, it's essential for individuals practicing boom-bust pacing to communicate their needs effectively and advocate for accommodations or adjustments when necessary. This might involve explaining their pacing approach to employers, colleagues, or friends and asking for understanding and support. Self-Care and Wellness: Boom-bust pacing is ultimately about self-care and managing one's health effectively. It involves not only managing physical energy but also attending to emotional and mental well-being, recognizing the importance of rest, relaxation, and activities that bring satisfaction, happiness, and joy. Overall, boom-bust pacing can be a valuable strategy for anyone, but more so for individuals with disabilities to manage their energy levels and navigate daily life more effectively. By learning to listen to their bodies, prioritize tasks, balance activity with rest ie: pacing themselves, individuals can optimize their functioning and improve their quality of life despite the challenges posed by their disabilities. Chronic Pain Resources  Here Living with Chronic pain Here [https://www.7cups.com/forum/disabilities/ArticlesResourcesConditionSpecificInformation_458/AFewTipsonHowToLearnToLiveWithPainbyDrCherylAMacDonald_23694/] More on Pacing Here [https://www.cfsselfhelp.org/library/pacing-numbers-using-your-heart-rate-to-stay-inside-energy-envelope] Q [https://www.7cups.com/forum/disabilities/ArticlesResourcesConditionSpecificInformation_458/AFewTipsonHowToLearnToLiveWithPainbyDrCherylAMacDonald_23694/]uestions to ask yourself, please reply below! * Do you recognize yourself as a ‘boom-bust’ or ‘pacing’ individual? * Have you ever used this method? If you haven’t will you try it in the future? If not why not? If you do does it help? * Can you remember one time when you carried on when you should have stopped and rested? What happened? * Do you have tips to share with us, please do! Consider joining the Disability Community Support Team. More information Here [https://www.7cups.com/forum/disabilities/CommunitySpace_227/JoinTheDisabilitySupportCommunityTeam_325009/] Tag list @777Bre777 @adaptableOcean4193 @adaptablePomegranate1587 @adequatelyInadequate @adventurousBranch3786 @AffyAvo @agreeableTurtle1021 @AguaNector6700 @amusingTalker1267 @Aqua1494 @Arsalanahmed @Ashleylovescats @AttentiveEar @audienta @AutiBoy @Averayne93 @azuladragon34 @BacktotheTrail @BeyondTheInvisible @BlindGrapefruit @blissfulTouch29 @Bndonovan02 @bouncyBreeze44 @bouncyVoice4149 @Breezy2013 @CaringBrit @CheeryPotato @CheerySandi @ChildGoddessFlute @Chloe1644 @cinnamoncocoa @CocoaCassie @Colorfulcatsofhope @considerateBunny7436 @Countrygirl095 @crystallizedrequiem @Daisy7cups @DichotomousDetia @disneymoonlight @Disneywoman @DoISayIt @DonaldK @DylanMark @Edobre399 @Emiliako @emotionalTalker2260 @enthusiasticOwl866 @enthusiasticTortoise6681 @fairmindedWater1140 @Fireskye13 @FrenchMarbles @friendlyEars8792 @goldenSpruce1512 @IcedCoffee211109 @IndigoWhisper @InfiniteThoughts2k19 @Jamesjones10123 @Jewels012222 @jovialButterfly6752 @JoyfulUnicorn @JoyIntoDarkness @K87 @kenzixo @killaj0ule @Kittibear @KuhnDisabled101 @kwheelz @lightTriangle7748 @LikeABirdWithoutWings @lovelycoacoa @lovelySun2900 @LoveMyRotty @magnifiedfaith @ManinblacK @MartianGirl347 @MeaningfulSilence @Meowsicle @MistyMagic @mnhtx3 @modestHickory2783 @modestOcean1286 @moosprbrk @MyNameIsNicole @NaomiR @NevaehRose @NotKhan2 @NovaIsNB @OneErased @PerfectHarmony10 @philosophicalAcai7803 @pinkbunnywabbit @Pixiechu @placidMoth @Plantsaremybestfriends @Poppia @PotFullOfSky2020 @rainbowVibes @Raysofsunshineandrainbow2005 @redGrapes1822 @Redheadmadeofglitter94 @repen13 @reservedCat9143 @RiggsMortis @sabeyesofblue3535 @Seachele @SmolBurrahobbit12 @SparklyCat @specialPurple1582 @StarsOrchidsOwls @stuffiessytem @sunshinegiraffe123 @tearstruck @theboymoana @TimidBear @TomatoEmi @turquoiseHemlock900 @u2canwin @wahmbrenda @Walker7957 @WeedyGarden @wishfulWillow6962 @WishUponAStar968 @wonderfulRainbow817 @xandia @Xisle @Zed786 Add or Remove yourself in this thread HERE [https://www.7cups.com/forum/disabilities/WeeklyCheckin_1053/2024TaglistDisabilitySupport_202464/] See more on pain here Pain Cafe Serie [https://www.7cups.com/forum/disabilities/CommunitySpace_227/PainPAINPAINPAINPAINPAIN_345746/]s 
CaringBrit profile picture
2024 - Taglist Disability Support
by CaringBrit
Last post
 2 days ago
...See more This thread controls an auto-updating tag list. To see the current list, go to Disability Support [https://rarelycharlie.github.io/taglist?3ec913e645043cdcd31f94a3324ab37c]. To add yourself to this tag list, press the Post to Thread button above and write the exact words Please add me. To remove yourself from this tag list, press the Post to Thread button above and write the exact words, Please remove me. This Taglist will be used for the Daily Check-Ins could even be used for Events etc. What happens after you join the tag list? You will notice an icon for a little bell up in the right corner of your screen. there is a letter icon, then the bell, then a jar, and then the icon for your account. That bell will tell you about your notifications. When we tag you, it will show up as a number on the bell. Click on the bell and a drop-down menu will appear and it will show you the link to the post where we tagged you. Current taglist as at  Feb 1st 2025 @777Bre777 @adaptableOcean4193 @adaptablePomegranate1587 @adequatelyInadequate @adventurousBranch3786 @AffyAvo @agreeableTurtle1021 @AguaNector6700 @amusingTalker1267 @Aqua1494 @Arsalanahmed @Ashleylovescats @AttentiveEar @audienta @AutiBoy @Averayne93 @azuladragon34 @BacktotheTrail @BeyondTheInvisible @BlindGrapefruit @blissfulTouch29 @Bndonovan02 @bouncyBreeze44 @bouncyVoice4149 @Breezy2013 @cal1860 @CaringBrit @CheeryPotato @CheerySandi @ChildGoddessFlute @Chloe1644 @cinnamoncocoa @CocoaCassie @Colorfulcatsofhope @communicativePond1728 @CompassionateMoon4024 @considerateBunny7436 @Countrygirl095 @crystallizedrequiem @Daisy7cups @DichotomousDetia @disneymoonlight @Disneywoman @DoISayIt @DonaldK @DylanMark @Edobre399 @Emiliako @emotionalTalker2260 @enigmaticOcean8813 @enthusiasticOwl866 @enthusiasticTortoise6681 @fairmindedWater1140 @Fireskye13 @FrenchMarbles @friendlyEars8792 @goldenSpruce1512 @greekcatperson @IcedCoffee211109 @IndigoWhisper @InfiniteThoughts2k19 @Jamesjones10123 @Jewels012222 @jovialButterfly6752 @JoyfulUnicorn @JoyIntoDarkness @JustLikeMellie @K87 @kenzixo @killaj0ule @Kittibear @KuhnDisabled101 @kwheelz @lightTriangle7748 @LikeABirdWithoutWings @lovelycoacoa @lovelySun2900 @LoveMyRotty @magnifiedfaith @ManinblacK @MartianGirl347 @MeaningfulSilence @Meowsicle @MistyMagic @mnhtx3 @modestHickory2783 @modestOcean1286 @moosprbrk @MyNameIsNicole @NaomiR @nessdamess @NevaehRose @NotKhan2 @Ofenkartoffel @OneErased @PerfectHarmony10 @philosophicalAcai7803 @pinkbunnywabbit @Pixiechu @placidMoth @Plantsaremybestfriends @Poppia @PotFullOfSky2020 @rainbowVibes @Raysofsunshineandrainbow2005 @redGrapes1822 @Redheadmadeofglitter94 @repen13 @reservedCat9143 @reservedOwl6476 @RiggsMortis @sabeyesofblue3535 @Seachele @SereneEnergy9119 @SmolBurrahobbit12 @SparklyCat @specialPurple1582 @StarsOrchidsOwls @stuffiessytem @sunshinegiraffe123 @tearstruck @theboymoana @TimidBear @TomatoEmi @turquoiseHemlock900 @u2canwin @wahmbrenda @Walker7957 @WeedyGarden @WishUponAStar968 @wonderfulRainbow817 @xandia @xxParkerxx @Zed786 Updated by MistyMagic
MistyMagic profile picture
Boom! or Bust! All about pacing . . .
by MistyMagic
Last post
 5 hours ago
...See more This post is part of our new series on  ⚡P A I N !💥 All About. . . Boom!⬆️ Bust 🔽 and Pacing 🟰 The concept of "boom-bust" and “pacing” particularly in the context of disabilities, refers to a pattern of energy expenditure characterized by alternating periods of high activity or productivity ("boom") and subsequent periods of low energy, exhaustion, or rest ("bust"). This approach is often employed by individuals with chronic illnesses, disabilities, or conditions that cause fluctuations in energy levels, such as chronic fatigue syndrome, fibromyalgia, or certain types of disabilities affecting energy levels. How often have you started out at the beginning of an activity or project full of energy (Boom) racing along only to begin feeling tired, but still you carry on because you don’t want to stop, or you just want to finish what you are doing, and then the next day you are so very tired and in pain or exhausted and cannot do anything (Busted) and the recovery takes a few days or even longer? Here's a breakdown of the “boom-bust” and “pacing” approach and its implications for individuals with disabilities: Understanding Energy Levels: Boom-bust pacing recognizes that individuals with disabilities often have limited energy reserves, which can fluctuate from day to day or even within the same day. It emphasizes the importance of being attuned to one's own energy levels and learning to manage them effectively. Managing Activities: Rather than trying to maintain a constant level of activity throughout the day, boom-bust pacing involves identifying periods of higher energy (boom) and using them for more demanding tasks or activities, while conserving energy during periods of lower energy (bust) through rest or less demanding activities. Prioritizing Tasks: Individuals practicing boom-bust pacing often prioritize tasks based on their energy levels. Important or demanding tasks are tackled during periods of higher energy, while less critical tasks may be deferred to periods of lower energy. Ask yourself these questions and think about your answers, then jot them down so that you have a list of your priorities, you can add them in your reply to this post. * What is important? - read all the points below before deciding! * What MUST I do? * What do I want to do? * What do others want me to do? * What am I expected to do? (may include deadlines) * What can I do? Avoiding Overexertion: By pacing activities and balancing periods of activity with rest, individuals can reduce the risk of overexertion, which can exacerbate symptoms or lead to "crashes" where energy levels plummet (bust), sometimes for an extended period as the recovery needed after a “boom” can be extensive and disproportionate to the gain. Examples:  You may want to finish weeding a flower border and do it all in one afternoon, the flower border looks great but you end up exhausted in bed for 3 days. If you had spread it over 2 afternoons then you would not end up exhausted. You have an important exam next week, so you stay up all night studying. The next day you cannot get out of bed because of the body aches and exhaustion. If you had split the studying into short periods then you would not have crashed so badly and could have revised for a few hours every day.  Remember to STOP BEFORE the pain is too bad or STOP BEFORE you feel exhausted, that way the rebound to recovery is faster, and smoother, and repeatable. Take a look at https://www.pomodorotechnique.com/ [https://www.pomodorotechnique.com/]  splitting studying or any task into shorter periods. The original technique has six steps: * Decide on the task to be done. * Set the Pomodoro timer (typically for 25 minutes). * Work on the task. * End work when the timer rings and take a short break (typically 5–10 minutes). * Go back to Step 2 and repeat until you complete four pomodoros. * After four pomodoros are done, take a long break (typically 20 to 30 minutes) instead of a short break. Once the long break is finished, return to step 2. ( a pomodoro is an interval of work time). Also the Spoon Theory [https://www.7cups.com/forum/DisabilitySupport_47/ArticlesResourcesConditionSpecificInformation_458/SpooniesandDropitlikeitsPOTSshirts_20186/] 🥄🥄🥄🥄🥄🥄 and Here [https://www.7cups.com/forum/disabilities/ArticlesResourcesConditionSpecificInformation_458/BoomorBustAllaboutpacing_327034/] Flexibility and Adaptability: Boom-bust pacing requires flexibility and adaptability, as energy levels can vary unpredictably. It's important for individuals to listen to their bodies, adjust their plans as needed, and never feel guilty for needing to rest or modify their activities. Communication and Advocacy: In work or social settings, it's essential for individuals practicing boom-bust pacing to communicate their needs effectively and advocate for accommodations or adjustments when necessary. This might involve explaining their pacing approach to employers, colleagues, or friends and asking for understanding and support. Self-Care and Wellness: Boom-bust pacing is ultimately about self-care and managing one's health effectively. It involves not only managing physical energy but also attending to emotional and mental well-being, recognizing the importance of rest, relaxation, and activities that bring satisfaction, happiness, and joy. Overall, boom-bust pacing can be a valuable strategy for anyone, but more so for individuals with disabilities to manage their energy levels and navigate daily life more effectively. By learning to listen to their bodies, prioritize tasks, balance activity with rest ie: pacing themselves, individuals can optimize their functioning and improve their quality of life despite the challenges posed by their disabilities. Chronic Pain Resources  Here Living with Chronic pain Here [https://www.7cups.com/forum/disabilities/ArticlesResourcesConditionSpecificInformation_458/AFewTipsonHowToLearnToLiveWithPainbyDrCherylAMacDonald_23694/] More on Pacing Here [https://www.cfsselfhelp.org/library/pacing-numbers-using-your-heart-rate-to-stay-inside-energy-envelope] Q [https://www.7cups.com/forum/disabilities/ArticlesResourcesConditionSpecificInformation_458/AFewTipsonHowToLearnToLiveWithPainbyDrCherylAMacDonald_23694/]uestions to ask yourself, please reply below! * Do you recognize yourself as a ‘boom-bust’ or ‘pacing’ individual? * Have you ever used this method? If you haven’t will you try it in the future? If not why not? If you do does it help? * Can you remember one time when you carried on when you should have stopped and rested? What happened? * Do you have tips to share with us, please do! Consider joining the Disability Community Support Team. More information Here [https://www.7cups.com/forum/disabilities/CommunitySpace_227/JoinTheDisabilitySupportCommunityTeam_325009/] Tag list @777Bre777 @adaptableOcean4193 @adaptablePomegranate1587 @adequatelyInadequate @adventurousBranch3786 @AffyAvo @agreeableTurtle1021 @AguaNector6700 @amusingTalker1267 @Aqua1494 @Arsalanahmed @Ashleylovescats @AttentiveEar @audienta @AutiBoy @Averayne93 @azuladragon34 @BacktotheTrail @BeyondTheInvisible @BlindGrapefruit @blissfulTouch29 @Bndonovan02 @bouncyBreeze44 @bouncyVoice4149 @Breezy2013 @CaringBrit @CheeryPotato @CheerySandi @ChildGoddessFlute @Chloe1644 @cinnamoncocoa @CocoaCassie @Colorfulcatsofhope @considerateBunny7436 @Countrygirl095 @crystallizedrequiem @Daisy7cups @DichotomousDetia @disneymoonlight @Disneywoman @DoISayIt @DonaldK @DylanMark @Edobre399 @Emiliako @emotionalTalker2260 @enthusiasticOwl866 @enthusiasticTortoise6681 @fairmindedWater1140 @Fireskye13 @FrenchMarbles @friendlyEars8792 @goldenSpruce1512 @IcedCoffee211109 @IndigoWhisper @InfiniteThoughts2k19 @Jamesjones10123 @Jewels012222 @jovialButterfly6752 @JoyfulUnicorn @JoyIntoDarkness @K87 @kenzixo @killaj0ule @Kittibear @KuhnDisabled101 @kwheelz @lightTriangle7748 @LikeABirdWithoutWings @lovelycoacoa @lovelySun2900 @LoveMyRotty @magnifiedfaith @ManinblacK @MartianGirl347 @MeaningfulSilence @Meowsicle @MistyMagic @mnhtx3 @modestHickory2783 @modestOcean1286 @moosprbrk @MyNameIsNicole @NaomiR @NevaehRose @NotKhan2 @NovaIsNB @OneErased @PerfectHarmony10 @philosophicalAcai7803 @pinkbunnywabbit @Pixiechu @placidMoth @Plantsaremybestfriends @Poppia @PotFullOfSky2020 @rainbowVibes @Raysofsunshineandrainbow2005 @redGrapes1822 @Redheadmadeofglitter94 @repen13 @reservedCat9143 @RiggsMortis @sabeyesofblue3535 @Seachele @SmolBurrahobbit12 @SparklyCat @specialPurple1582 @StarsOrchidsOwls @stuffiessytem @sunshinegiraffe123 @tearstruck @theboymoana @TimidBear @TomatoEmi @turquoiseHemlock900 @u2canwin @wahmbrenda @Walker7957 @WeedyGarden @wishfulWillow6962 @WishUponAStar968 @wonderfulRainbow817 @xandia @Xisle @Zed786 Add or Remove yourself in this thread HERE [https://www.7cups.com/forum/disabilities/WeeklyCheckin_1053/2024TaglistDisabilitySupport_202464/] See more on pain here Pain Cafe Serie [https://www.7cups.com/forum/disabilities/CommunitySpace_227/PainPAINPAINPAINPAINPAIN_345746/]s 
MistyMagic profile picture
Self-Advocacy
by MistyMagic
Last post
 Monday
...See more Advocating for oneself in health issues can be very important for ensuring you receive the best possible care, but first:-  What is ‘advocating’? It's being able to speak up for yourself rather than relying on others – having the confidence to say or do something when you don't think something is right, or when something needs reviewing, or changing. Sometimes this is called self-advocacy and when it comes to our health that can really be important! Have a goal!  What do you want to achieve? This could be something as simple as ‘understanding what is said to you’, or to ‘get a referral to a specialist’. Or, more complicated such as ‘a change to medication’ or ‘get an explanation on a report’. Be realistic in your choice. It helps to decide your goal or target before you tackle self-advocating. Sometimes it is better or easier to have a close friend, carer, or relative advocate for us, we may be ill or too weak or disabled to be able to self-advocate in which case perhaps suggest they read this post or share the information with them to help both of you advocate successfully. Being disabled or ill with a condition can mean we feel very vulnerable and unable to support ourselves effectively in what can seem to be a very stressful situation like a doctor appointment. That is when preparation can be key to feeling like we have achieved the best. Sometimes we may lack the confidence we need to make the best decisions and that is when learning as much as we can about our disability, condition, or mental health issues really can reap benefits. Here are some strategies to help you effectively advocate for yourself: 1. Educate Yourself * Understand Your Condition: Research your health condition thoroughly. Use reputable sources such as medical journals, trusted health websites (like Mayo Clinic or WebMD), and patient advocacy groups. * Know Your Medications: Learn about the medications you're prescribed, including side effects, interactions, and the reason for taking them. 2. Communicate Clearly * Be Honest and Open: Clearly describe your symptoms, concerns, and how you're feeling. Don't downplay or exaggerate your condition. * Ask Questions: If you don't understand something, ask your healthcare provider to explain it in simpler terms. Questions like "Can you explain that again?" or "What does that mean?" can be very helpful. 3. Be Organized * Keep Records: Maintain a detailed health journal with your symptoms, medications, and any changes in your condition. Bring this journal to your appointments. * Prepare for Appointments: Make a list of questions and concerns before each visit. Prioritize the most important issues to ensure they get addressed. * Take Notes: During the appointment ask if you can take notes so that you remember clearly what is said, or ask a friend or family member to come with you to do this so you can concentrate on what is said and carefully choose a reply. 4. Build a Support Network * Bring an Advocate: Consider bringing a trusted friend or family member to appointments to help you remember information and provide emotional support. * Join Support Groups: Connect with others who have the same condition. They can provide valuable insights and support. 5. Know Your Rights * Patient Rights: Familiarize yourself with your rights as a patient. This includes the right to informed consent, the right to access your medical records, and the right to a second opinion. (not applicable to all countries so please check yours!) * Insurance and Coverage: Understand your health insurance policy, what it covers, and your rights regarding appeals and grievances. If you are in a country that does not routinely need health insurance then look at the applicable information such as ‘PALS’ in the UK,  * Research your Doctor: hospital, or clinic. Know what they can and can’t do for you. Look at their website and read all the information there to familiarize yourself with their stance. 6. Be Assertive, Not Aggressive * Advocate Assertively: Assert your needs respectfully. Use “I” statements like “I need more information about...” or “I’m concerned about...” to communicate without seeming confrontational. * Be Polite: use please and thank-you when needed. * Set Boundaries: If a healthcare provider is dismissive or not listening, it’s okay to seek a second opinion or switch providers. 7. Utilize Resources * Patient Advocates: Many hospitals have patient advocates who can help you navigate the healthcare system. * Online Resources: Use online tools and resources for additional support, such as telemedicine services or patient advocacy organizations. 8. Follow Up * Clarify Instructions: Before leaving an appointment, make sure you understand the next steps, including any follow-up appointments, tests, or treatments. * Monitor Progress: Keep track of your progress and any changes in your condition, and report these to your healthcare provider. Use that journal to keep notes of pain or mobility and your condition. 9. Self-Care and Mental Health * Take Care of Yourself: Maintain a healthy lifestyle, manage stress, and seek mental health support if needed. * Mindfulness and Relaxation: Techniques such as mindfulness, meditation, and relaxation exercises can help manage anxiety related to health issues. Conclusion Advocating for yourself in health matters involves being informed, organized, and assertive while maintaining respectful communication with healthcare providers. By taking these steps, you can play an active role in your healthcare and improve your overall well-being. But. . it isn’t always easy, in fact it can be quite challenging at first. It also takes a strong will to advocate and when we are facing a health problem that can be the last thing that we want to face.  Thoughts For You: ✅ Please share with us your experiences of self-advocacy. ❔Have you tried it, how did it work out? 💡  What tips can you share to help others have a better experience, please share them here. 💭 Might you try this approach in the future?
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Listeners with a Disability - Supporting those with Disabilities (2024-2025)
by AffyAvo
Last post
 Sunday
...See more We had one of these before, but many of the listeners are no longer using 7cups. So here's an updated one. Are you a listener with a disability willing to support others with a disability? Please share here! Also note what your disability is or give as much detail as you're comfortable wtih so that members can find someone with similar issues.
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Braille! - January is World Braille Month!
by MistyMagic
Last post
 January 13th
...See more January is World Braille month Louis Braille was born on January 4, 1809 and this year we celebrate his 206th birthday!   Born in Coupvray, France, Louis became blind at the age of 3 while playing with tools in his father’s shop.  When he was 10, he was sent to the school for the blind in Paris, but there were very few books available at that time for people who were blind.  Inspired by a system of tactile writing created by French army captain Charles Barbier, Louis Braille spent two years trying to simplify and perfect the code.  When he was 15, the new code was ready, and was easier to learn and quicker to read. It took many years before the Braille code was adopted widely.  The first book in braille was published in 1827 and in 1878, the World Congress for the Blind voted to make Braille the system of reading and writing for people worldwide who are blind.  There ensued a War of the Dots and it was not until 1932 that Standard English Braille was established for all English-speaking countries. Braille is a tactile writing system used by individuals who are visually impaired or blind. The system enables users to read and write through touch, empowering them to access information independently. Structure of Braille Braille is based on a matrix of six raised dots arranged in a rectangular block called a "cell," with two columns and three rows. Each cell represents a character, letter, number, or punctuation mark. The dots are numbered 1 through 6: 1  4 2  5 3  6 By raising specific combinations of these dots, different characters can be formed. For example: * The letter "A" is represented by a single raised dot in position 1. * The letter "B" uses dots 1 and 2. * Numbers, capital letters, and special characters are indicated by specific prefixes. Types of Braille * Grade 1 Braille: A basic system where each Braille cell corresponds to a single letter, number, or punctuation mark. It is typically used by beginners. * Grade 2 Braille: Includes contractions and abbreviations for common words or letter groups, making reading and writing faster and more efficient. * Grade 3 Braille: An advanced system used for shorthand, often in personal notes or informal writing. Applications of Braille Braille is used in various formats and devices to enhance accessibility: * Books and Documents: Printed Braille materials are essential for education and leisure. * Labels and Signage: Many elevators, ATMs, and public spaces include Braille signage to  * provide information. * Digital Braille Devices: Refreshable Braille displays and notetakers allow users to access digital content, including emails, websites, and e-books, through tactile feedback. Importance of Braille Braille is vital for literacy and independence among people who are blind. While audio technology is increasingly available (such as screen readers), Braille remains indispensable for developing spelling, grammar, and tactile literacy skills. It ensures access to a wide range of fields, from education to employment. Challenges and Advancements Challenges include the high cost of producing Braille materials and devices, as well as limited availability in some regions. However, advances in technology, such as affordable refreshable Braille displays, are helping to bridge this gap. Braille's impact extends beyond language; it is a tool of empowerment, inclusion, and equality, ensuring that individuals who are blind can fully participate in society. Read more about the story of Louis Braille [http://www.pathstoliteracy.org/story-louis-braille]. Learn the song for celebrating Louis Braille’s birthday! [https://www.pathstoliteracy.org/resource/celebration-ideas-happy-birthday-louis-braille/] Play the Louis Braille Timeline Game [https://www.pathstoliteracy.org/louis-braille-timeline-game/]. Written as part of the Disability Support Community Articles. More can be found here  [https://www.7cups.com/forum/disabilities/ArticlesResourcesConditionSpecificInformation_458/ArticlesResourcesAlphabeticList_233701/] If you have a condition or 'Awareness Campaign' that you feel we should recognise please message either myself @MistyMagic [https://www.7cups.com/@MistyMagic] (teens and adults) or @AffyAvo  [https://www.7cups.com/@AffyAvo](adults)
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Festive Greetings!
by MistyMagic
Last post
 December 26th, 2024
...See more Hey everyone! Festive Season's Greetings! On behalf of the Disability Support Community Team @MistyMagic, @AffyAvo and @compassionateMoon4024  I just wanted to send to you all, members and listeners, lots of warm cheer, fleecy blankets, hot drinks and comforting fun for this festive season. Does the prospect of the next week send you into a turmoil, or do you love all the lights and Christmas spirit? Is your life feeling like A, B, or C? and Share with us your thoughts and wishes for 2025! A. Everything just falls apart at this time of year and seems out to get you?  B. It is hard work but fun! C. I love it all! Yayyyyyyy! Fun! Fun! Fun!🎄🎄   . . . for being party of our Community, for posting and replying in the forums, having 1-1 conversations and joining in with the chat and discussions in the Disability Support room 💛💙 💚
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IDPWD - International Day of People With Disabilites!
by MistyMagic
Last post
 December 4th, 2024
...See more To raise awareness of the International Day Of People With Disabilities I thought it might be interesting to start a discussion on what the definition of 'disability' is thought of across the world. Each country seems to have their own definition. So, what do you think? What does your country think? Do you agree or disagree? How does it make you feel? Happy? Annoyed? Upset? Hopeful? Share with us! The definition of "disability" varies across countries and cultures, reflecting diverse legal, social, and cultural frameworks. Below are some perspectives on how disability is understood and defined in different contexts: ------------------------- 1. International Definition * United Nations (UN) Convention on the Rights of Persons with Disabilities (CRPD): [https://r.search.yahoo.com/_ylt=AwrkgDqb5E5n7wEAuOIM34lQ;_ylu=Y29sbwNpcjIEcG9zAzIEdnRpZAMEc2VjA3Nj/RV=2/RE=1734433180/RO=10/RU=https%3A%2F%2Fwww.equalityhumanrights.com%2Four-work%2Four-human-rights-work%2Fmonitoring-and-promoting-un-treaties%2Fun-convention-rights-persons/RK=2/RS=.awcOXU6HyeO3OjGE1yqjfkURnQ-] The CRPD defines disability as including "long-term physical, mental, intellectual, or sensory impairments which, in interaction with various barriers, may hinder full and effective participation in society on an equal basis with others." This definition emphasizes a social model of disability, focusing on the interaction between impairments and societal barriers. ------------------------- 2. Western Countries * United States: Under the Americans with Disabilities Act (ADA), a disability is defined as "a physical or mental impairment that substantially limits one or more major life activities." This definition blends the medical model (focus on individual impairments) and the social model (consideration of barriers). * European Union (EU): In the EU, disability is often viewed through the social model, but definitions vary by country. For example: * In the UK, the Equality Act 2010 defines disability as "a physical or mental impairment that has a substantial and long-term negative effect on a person's ability to do normal daily activities."  * In Germany, definitions often align with the social insurance model, emphasizing medical diagnoses in relation to work capability. ------------------------- 3. Non-Western Countries * China: Disability is defined primarily through the medical model and is regulated by the Law on the Protection of Disabled Persons. It includes physical, intellectual, and sensory impairments but often focuses on the functionality of individuals in specific roles. * India: The Rights of Persons with Disabilities Act, 2016 defines disability broadly, listing 21 conditions, including mental illness and specific learning disabilities. It adopts a mix of the social and medical models, aiming for inclusivity. ------------------------- 4. Indigenous and Traditional Cultures * In some indigenous cultures, disability may not be viewed as an impairment but as a unique difference or even a spiritual condition. * Native American tribes sometimes regard disability as a natural variation within the community, not stigmatized. * In African contexts, cultural views on disability vary widely. Some communities see it as a consequence of spiritual or ancestral factors, while others interpret it as a natural part of human diversity. ------------------------- 5. Sociocultural Dimensions * Japan: Disability is defined through both medical and societal frameworks. Social perceptions are influenced by traditional beliefs such as "gaman" (perseverance), leading to a focus on overcoming barriers rather than accommodations. * Middle Eastern Countries: Islamic traditions often emphasize community responsibility and care for individuals with disabilities. Definitions of disability are shaped by religious principles and the medical model. ------------------------- Summary While there is increasing global alignment towards the social model of disability (as promoted by the CRPD), interpretations remain influenced by local legal systems, cultural norms, and historical contexts. These differences underscore the importance of understanding disability within specific cultural and regional frameworks to ensure effective policies and inclusive practices. https://idpwd.org/ [https://idpwd.org/]  Written as part of the Disability Support Community Articles. More infoposts can be found  [https://www.mayoclinic.org/diseases-conditions/postural-tachycardia-syndrome-pots/symptoms-causes/syc-20451722] If you have a condition or 'Awareness Campaign' that you feel we should recognise please message  [https://www.mayoclinic.org/diseases-conditions/postural-tachycardia-syndrome-pots/symptoms-causes/syc-20451722]@MistyMagic [https://www.7cups.com/@MistyMagic] (teens and adults) or @AffyAvo [https://www.7cups.com/@AffyAvo](adults)
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What is Epilepsy?
by MistyMagic
Last post
 November 13th, 2024
...See more Epilepsy Awareness Month, observed in November, brings attention to epilepsy—a neurological disorder that causes recurrent seizures due to abnormal electrical activity in the brain. This condition affects millions of people worldwide and has various causes, symptoms, and treatments. What is Epilepsy? Epilepsy is a chronic disorder characterized by unprovoked, recurrent seizures. These seizures happen when clusters of nerve cells in the brain send out abnormal signals, causing a wide range of physical effects, from momentary lapses in awareness to convulsions. Causes of Epilepsy Epilepsy can result from various factors, although in many cases, the exact cause is unknown. Potential causes include: * Genetic Influence: Some types of epilepsy run in families and may have a genetic component. * Head Trauma: Injuries from accidents or falls can lead to epilepsy. * Brain Conditions: Brain tumors, strokes, and other brain damage can increase seizure risks. * Infectious Diseases: Conditions like meningitis, AIDS, and viral encephalitis can trigger epilepsy. * Prenatal Injury: Injuries to the brain before birth, often due to infection or oxygen deprivation, can lead to epilepsy in children. * Developmental Disorders: Conditions like autism or neurofibromatosis have been linked to epilepsy. Symptoms of Epilepsy Symptoms of epilepsy vary widely based on the type of seizure and which part of the brain is affected. Common symptoms include: * Temporary confusion or "blanking out" * A staring spell * Uncontrolled jerking movements in the arms and legs * Loss of consciousness or awareness * Psychic symptoms (fear, anxiety, or deja vu) Seizures are generally classified into two main types: * Focal (Partial) Seizures: These seizures originate in a specific part of the brain and may cause mild to severe symptoms. * Generalized Seizures: These involve all areas of the brain and include types like tonic-clonic (grand mal), absence, myoclonic, and atonic seizures. Treatments for Epilepsy Managing epilepsy typically involves a combination of medication, lifestyle adjustments, and, in some cases, surgery. Treatment approaches include: * Anti-Seizure Medications: Medications like valproic acid, lamotrigine, and levetiracetam are commonly prescribed to control seizures. * Ketogenic Diet: This high-fat, low-carbohydrate diet is sometimes used, particularly in children, to help reduce seizures. * Vagus Nerve Stimulation (VNS): A device implanted under the skin stimulates the vagus nerve, which can help reduce seizure frequency. * Responsive Neurostimulation: A device implanted in the brain detects abnormal electrical activity and delivers electrical impulses to prevent seizures. * Surgery: In severe cases, surgery may be recommended to remove the part of the brain causing seizures. Living with Epilepsy People with epilepsy often lead full lives but may require certain precautions, like avoiding triggers, wearing medical identification, and managing medication routines. Support from family, friends, and epilepsy-focused organizations can also help manage the emotional and psychological challenges of the condition. For more information, consider these resources: * Epilepsy Foundation [https://www.epilepsy.com/]: Provides comprehensive information on epilepsy, including types, treatment options, and support. * National Institute of Neurological Disorders and Stroke (NINDS) [https://www.ninds.nih.gov/health-information/disorders/epilepsy]: Offers information on research, treatment, and clinical trials. * Centers for Disease Control and Prevention (CDC) on Epilepsy [https://www.cdc.gov/epilepsy/]: Contains data on epilepsy prevalence, resources, and public health initiatives. Written as part of the Disability Support Community Articles. More can be found here  [https://www.7cups.com/forum/disabilities/ArticlesResourcesConditionSpecificInformation_458/ArticlesResourcesAlphabeticList_233701/] If you have a condition or 'Awareness Campaign' that you feel we should recognise please message either myself @MistyMagic [https://www.7cups.com/@MistyMagic] (teens and adults) or @AffyAvo  [https://www.7cups.com/@AffyAvo](adults)
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POTS - World Day! Postural Orthostatic Tachycardia Syndrome
by MistyMagic
Last post
 November 7th, 2024
...See more October 25th is World Postural Orthostatic Tachycardia Syndrome Day! Find out more! What is POTS? Postural Orthostatic Tachycardia Syndrome (POTS) is a form of dysautonomia, a disorder affecting the autonomic nervous system, which controls bodily functions like heart rate, blood pressure, digestion, and temperature regulation. In POTS, the key issue is an abnormal increase in heart rate when transitioning from lying down to standing up, without a significant drop in blood pressure. This condition can lead to a variety of symptoms that affect daily life and vary in severity. POTS is often diagnosed based on a heart rate increase of at least 30 beats per minute (bpm) in adults (or 40 bpm in adolescents) within 10 minutes of standing, without a corresponding drop in blood pressure. ------------------------- Common Symptoms of POTS POTS can produce a range of symptoms, including: * Rapid heart rate (tachycardia) upon standing. * Dizziness or feeling lightheaded, especially when standing up. * Fainting (syncope) or feeling close to fainting. * Fatigue, often severe and persistent. * Brain fog, including difficulty concentrating or thinking clearly. * Chest pain or palpitations. * Shortness of breath, especially when standing. * Headaches and migraines. * Nausea or gastrointestinal problems, including bloating and diarrhea. * Cold hands and feet, or changes in skin color (e.g., a purplish discoloration of the legs when standing). * Exercise intolerance—feeling unwell after even mild physical exertion. ------------------------- Key Questions and Answers1. How is POTS diagnosed? POTS is diagnosed using a tilt table test or by measuring heart rate and blood pressure changes during a simple standing test. In the tilt table test, a person is strapped to a table that tilts them from a lying to standing position while monitoring heart rate and blood pressure. A heart rate increase of 30 bpm (or 40 bpm in adolescents) within 10 minutes of standing without a significant drop in blood pressure indicates POTS. 2. What causes POTS? POTS has multiple potential causes, including: * Genetics: Some people have a genetic predisposition to POTS. * Viral infections: Many cases begin after a viral illness (e.g., mononucleosis, COVID-19). * Autoimmune disorders: POTS can co-occur with autoimmune diseases like lupus or Sjögren’s syndrome. * Deconditioning: A long period of bed rest or inactivity may trigger POTS symptoms. * Ehlers-Danlos Syndrome (EDS): Many people with POTS have hypermobility syndromes like EDS. 3. How is POTS treated? While there is no cure for POTS, treatment focuses on managing symptoms. Common approaches include: * Increased fluid and salt intake: to help raise blood volume. * Compression stockings: to improve circulation in the legs. * Exercise regimen: gradual reconditioning with exercises like recumbent biking. * Medications: Beta-blockers, fludrocortisone, midodrine, and others may help control heart rate and blood pressure. 4. Is POTS related to long COVID? Yes, some people develop POTS after recovering from COVID-19, and it is a recognized manifestation of long COVID. The virus is believed to affect the autonomic nervous system, leading to the development of POTS symptoms in previously healthy individuals. 5. Can POTS improve or resolve over time? Some people experience significant improvement or even remission of symptoms over time, especially with appropriate treatment and lifestyle changes. However, POTS can also be a chronic condition, and for some, it may require long-term management. ------------------------- Citations & Further Reading 7 Cups Interview - Living with hEDs and POTS 7 Cups Post - Drop with Pots [https://www.7cups.com/forum/disabilities/ArticlesResourcesConditionSpecificInformation_458/SpooniesandDropitlikeitsPOTSshirts_20186/] 7 Cups Interview - POTS and Me [https://www.7cups.com/forum/DisabilitySupport_47/InterviewSeriesInclusivityDiaries_2386/PoTSandMeAnInterviewwithwonderfulRainbow817_278731/] POTS World Day Information [https://www.potsuk.org/about-us/pots-awareness-day-25th-october/] * National Institute of Neurological Disorders and Stroke (NINDS) - POTS Overview * NINDS POTS Fact Sheet [https://www.ninds.nih.gov/health-information/disorders/postural-orthostatic-tachycardia-syndrome] Johns Hopkins Medicine - POTS Diagnosis and Management * Johns Hopkins on POTS [https://www.eds.clinic/articles/johns-hopkins-pots-clinic#:~:text=Postural%20Orthostatic%20Tachycardia%20Syndrome%20(POTS)%20affects%20the%20autonomic%20nervous%20system,strategies%20and%20treatments%20for%20patients.] Mayo Clinic - Overview of POTS * Mayo Clinic POTS Overview [https://www.mayoclinic.org/diseases-conditions/postural-tachycardia-syndrome-pots/symptoms-causes/syc-20451722] Written as part of the Disability Support Community Articles. More can be found  If you have a condition or 'Awareness Campaign' that you feel we should recognise please message  @MistyMagic [https://www.7cups.com/@MistyMagic] (teens and adults) or @AffyAvo  [https://www.7cups.com/@AffyAvo](adults)
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CRPS - What is Complex Regional Pain Syndrome
by MistyMagic
Last post
 November 7th, 2024
...See more Today is World CRPS Day!What is Complex Regional Pain Syndrome (CRPS)? Complex Regional Pain Syndrome (CRPS) is a chronic pain condition usually affecting one limb, often after an injury. It is thought to be caused by damage to, or malfunction of, the peripheral and central nervous systems. The pain associated with CRPS is disproportionate to the initial injury and can result in long-term disability. CRPS is classified into two types: * CRPS Type I (formerly Reflex Sympathetic Dystrophy - RSD): Occurs without confirmed nerve damage. * CRPS Type II (formerly Causalgia): Occurs with confirmed nerve damage. Symptoms of CRPS CRPS symptoms can vary in intensity and duration, but commonly include: * Severe, constant, burning pain: Often out of proportion to the injury. * Swelling and changes in skin color: Skin may appear blotchy, purple, or pale. * Temperature changes in the skin: The affected area may feel unusually warm or cold. * Sensitivity to touch: Light touch or even wind can cause significant pain (allodynia). * Changes in skin texture: Skin may become thin or shiny. * Changes in hair and nail growth: Increased or decreased growth in the affected limb. * Stiffness and decreased mobility: Especially in the affected joints. * Muscle weakness or atrophy: Due to disuse or decreased movement. * Tremors, spasms, or dystonia: Uncontrollable muscle movements can occur. Symptoms often spread from the site of the initial injury to other areas and can worsen over time if not treated. Commonly Asked Questions about CRPS1. What causes CRPS? CRPS often follows an injury (like a fracture, surgery, or even a minor trauma), but the exact cause isn’t fully understood. It may result from an abnormal immune response, nerve damage, or improper healing of an injury, leading to abnormal pain signaling. 2. How is CRPS diagnosed? CRPS is typically diagnosed based on a combination of a detailed medical history and physical examination. There's no definitive test, but tools like X-rays, MRI scans, or bone scans may be used to rule out other conditions and observe characteristic changes like bone loss or abnormal inflammation. 3. Can CRPS spread to other parts of the body? Yes, in some cases, CRPS can spread from the originally affected limb to other parts of the body. The spread can be gradual, and it may involve the opposite limb or nearby regions. 4. Is CRPS curable? There is no cure for CRPS, but early treatment can help manage symptoms. Treatments include physical therapy, medications (like pain relievers, nerve blocks, or corticosteroids), and psychological support to help cope with the chronic pain. 5. What are the treatment options for CRPS? Treatment typically involves a multidisciplinary approach including: * Pain management: Medications such as NSAIDs, anticonvulsants (e.g., gabapentin), and opioids for severe cases. * Physical therapy: To maintain movement and reduce stiffness. * Nerve blocks or spinal cord stimulation: For severe cases, nerve blocks or electrical stimulation may be used to reduce pain. * Psychological support: Cognitive-behavioral therapy (CBT) to help manage the emotional and mental toll of living with chronic pain. * Alternative therapies: Acupuncture, mirror therapy, or graded motor imagery have been used in some cases. * Coping strategies https://rsds.org/living-with-crps/coping-strategies/ [https://rsds.org/living-with-crps/coping-strategies/]  6. What is the prognosis for someone with CRPS? The outlook for people with CRPS varies. Early diagnosis and intervention are key to preventing the condition from becoming more severe. Some individuals recover fully, while others may continue to experience symptoms for years, potentially leading to long-term disability. 7. Are there any complications associated with CRPS? CRPS can lead to several complications including: * Chronic pain and disability: Severe pain can lead to loss of function and disability in the affected limb. * Depression and anxiety: Coping with chronic pain may lead to mental health issues. * Muscle atrophy: From reduced movement and use of the affected limb. 8. Is there a genetic component to CRPS? While CRPS is generally not considered hereditary, some research suggests that genetic factors may play a role in how people process pain, making certain individuals more susceptible to CRPS. 9. Can children or adolescents develop CRPS? Yes, although it is more common in adults, CRPS can also occur in children and adolescents. In young people, the condition tends to resolve more quickly with treatment compared to adults. 10. What research is being done on CRPS? Ongoing research aims to better understand the underlying mechanisms of CRPS, improve diagnostic tools, and develop more effective treatments, including targeted therapies to modulate pain pathways. References * National Institute of Neurological Disorders and Stroke (NINDS). Complex Regional Pain Syndrome Fact Sheet [https://www.ninds.nih.gov/Disorders/All-Disorders/Complex-Regional-Pain-Syndrome-Information-Page] * Mayo Clinic. Complex Regional Pain Syndrome (CRPS) [https://www.mayoclinic.org/diseases-conditions/crps-complex-regional-pain-syndrome/symptoms-causes/syc-20371151] * American RSDHope Organization. CRPS Information and FAQs [https://rsdhope.org/]
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Waiting For Surgery? Tips and information
by MistyMagic
Last post
 November 7th, 2024
...See more Waiting for surgery can be a stressful and anxiety-inducing time, especially when faced with uncertainty about outcomes, potential complications, and recovery. Please bear in mind that this is written from my experience, always check information with your health team. I know that I found it extremely stressful, and then my surgery was cancelled at the very last moment. So whilst I was waiting for the next date I tried to figure out how I could ‘wait’ better.  It is proved that some coping strategies during this period can improve mental and emotional well-being, which may even have a positive effect on physical health and post-surgical outcomes.  Here are some of my tips and also some other evidence-based tips and strategies that I found whilst managing the stress of the wait for surgery. 1. Acknowledge and Manage Anxiety * Recognize and Validate Feelings: Anxiety about surgery is natural. Acknowledging this emotion rather than suppressing it can help reduce its intensity. - Remember why you are having the surgery. - Concentrate on positive outcomes. It helped me to think that in one week I would be post-surgery, then in three days it would be post-surgery, then one day, one hour etc. * Mindfulness and Relaxation Techniques: Practicing mindfulness, deep breathing, and progressive muscle relaxation can help lower stress. Research shows that these techniques can reduce pre-surgical anxiety and potentially improve post-surgical recovery outcomes (Ashton et al., 2017). 2. Education and Information * Gather Accurate Information: Knowing what to expect can reduce uncertainty, which is a common trigger for anxiety. Understanding the procedure, potential risks, benefits, and recovery timeline can help set realistic expectations. * Consult with Medical Professionals: Patients should feel comfortable discussing concerns with their healthcare team. One study found that better communication with doctors can significantly decrease pre-surgery anxiety (Auerbach et al., 2020) . * Ask Questions - make a list of questions and information that you need then ask the nurses and health care staff- what do you need to take with you, what can’t you bring.  * If you can take a phone or tablet then try to download apps that you will find useful, relaxation apps,  films, games, or audio books are very useful. Remember to take in headphones and charger too! 3. Find a Support Network * Engage Family and Friends: Explain to them what your surgery is and when and about your after-care. Having a support network can provide emotional comfort, whether it's through talking, companionship, or help with daily activities during the waiting period. Strong social support has been linked to improved surgical outcomes and emotional resilience (Schmid et al., 2019) . * Joining a Support Group with others facing similar procedures can be helpful. Sharing experiences and coping strategies may provide reassurance and reduce feelings of isolation. Ask your doctor’s practice and see if there are any local or online groups, if not then maybe consider starting one. 4. Engage in Healthy Lifestyle Choices * Maintain Physical Activity: Gentle exercise, like walking or stretching, can improve mood, boost physical health, and prepare the body for surgery (Louw et al., 2017) . Have a dental check-up. Good oral hygiene can help, check there are no loose teeth or crowns, try and have your teeth cleaned so you are sparkling before the anesthetic. * Eat a Balanced Diet. Try and choose healthy foods, especially those with vitamins C, D, and protein, support immune function and tissue repair, which can be beneficial pre- and post-surgery. Think about the food you will need after your surgery when you are back home. Would it help to batch-cook and freeze meals so that you do not need to cook so much? Or buy canned goods, and freeze bread and milk so that shopping trips aren’t so frequent. * Sleep Hygiene: Prioritize good sleep, which can enhance mental resilience and immune function, aiding in recovery. Limit screen time before bed, find relaxation apps. 5. Use Positive Visualization and Goal Setting * Visualize a Positive Outcome: Studies suggest that visualizing a successful surgery and recovery can be a powerful tool for reducing stress. It helps patients feel in control, enhancing their overall resilience (Trent & Wilson, 2018) . * Set Small Goals: Focusing on achievable goals can provide a sense of accomplishment and keep the mind occupied. This can include tasks like preparing your hospital bag,  planning enjoyable activities, or organizing medical paperwork. 6. Practice Patience and Acceptance * Acceptance-Based Coping: Accepting the situation rather than fixating on changing what cannot be controlled has been shown to reduce stress. Acceptance-based approaches, such as Acceptance and Commitment Therapy (ACT), may be beneficial for patients awaiting surgery, as they encourage people to engage with life fully, even in the face of uncertainty (Hayes et al., 2016) . Take 7 Cups course on ACT https://www.7cups.com/act-therapy-techniques/ [https://www.7cups.com/act-therapy-techniques/]  7. Explore Distraction and Fun * Engage in Hobbies: Filling the waiting period with activities you enjoy can reduce pre-surgery stress. Watching movies, reading, gardening, or any other enjoyable activities can redirect focus from worry. * Limit Overexposure to Health Information: While researching can help with preparation, overloading oneself with information can sometimes increase anxiety. Limiting time spent on health websites or forums can prevent information overload. 8. Prepare Logistically and Mentally for the Recovery Period * Organize Recovery Essentials: Preparing a comfortable recovery space at home, arranging for help, and having necessary supplies can offer peace of mind. (see above also) * Prepare Mentally for Setbacks: Knowing that setbacks are possible during recovery can help adjust expectations. Studies show that setting realistic expectations for recovery contributes to a better outlook and mental well-being (Anderson et al., 2015) . Summary Coping with the wait for surgery involves emotional management, practical planning, and support-seeking. Evidence suggests that those who actively use these strategies not only feel better emotionally but may experience better physical outcomes. Implementing these coping skills can transform a potentially distressing waiting period into one that is manageable and constructive. Good luck to all waiting or recovering! Now let's hear from all of you!1) What are your best tips for waiting for surgery, please share with us.2) Have you had surgery or are you awaiting surgery? Tell us more!3) For the fun side, tell us about your best fun distractions, what do you like to do? What helps distract you when you are facing something?
MistyMagic profile picture
World Mental Health Day!
by MistyMagic
Last post
 November 7th, 2024
...See more Today is World Mental Health Day! Mental health and disabilities are interconnected in many ways. To me, Mental Health refers to emotional, psychological, and social well-being, while disabilities can be physical, cognitive, sensory, or mental. People with disabilities often experience challenges in maintaining mental health, and can suffer from things like depression and anxiety, and conversely, poor mental health can contribute to disabilities. Understanding the relationship between mental health and disabilities is crucial for creating a more inclusive and supportive society. The Relationship Between Mental Health and Disabilities: * Mental Health as a Disability: Mental health conditions like depression, anxiety, bipolar disorder, bpd, or DID can be disabling when they impair a person's ability to perform everyday activities or work. For example, depression might affect someone’s ability to concentrate or leave their house, thus limiting their participation in daily life. Having agoraphobia can result in this too. * Impact of Disabilities on Mental Health: Physical or intellectual disabilities can have significant psychological effects. Many individuals with disabilities experience higher rates of mental health issues such as depression and anxiety due to social isolation, stigma, or the physical pain that may accompany certain conditions . Being in constant pain can massively impact on mental wellness too. * Intersectionality: People with disabilities often experience other marginalizing factors such as race, gender, or socioeconomic status, which can further impact their mental health. These layers of disadvantage can lead to cumulative stress, negatively affecting psychological well-being. Common Challenges and Solutions * Stigma and Discrimination: Both mental health conditions and disabilities are often stigmatized, which can lead to social exclusion, bullying, or discrimination. This stigma can prevent people from seeking help and contribute to feelings of shame. Solution: Public education and awareness campaigns can reduce stigma, while promoting open discussions about mental health and disabilities can foster more inclusive environments. This is one of our aims in the Disability Support Community forums and chatroom. * Lack of Accessibility: People with disabilities may struggle to access appropriate mental health care. For example, someone with a mobility impairment may find it difficult to reach a therapist's office, or someone with sensory impairments may not have access to communication aids. Solution: Ensuring that mental health services are accessible to everyone, regardless of physical or cognitive limitations, is crucial. Teletherapy and adaptive technologies are good examples of inclusive practices. * Mental Health Support in Disability Services: Services for people with disabilities often focus on their physical or cognitive needs while neglecting mental health. This can leave mental health issues unaddressed. Solution: Integrated care that addresses both physical and mental health simultaneously can offer a more holistic approach. For instance, physical therapy programs for someone with a disability could also incorporate mental health counselling * Compartmentalizing Issues: Often people with disabilities are set apart and labeled only as their disability rather than seeing the total person. Solution: Use a holistic approach, take into account all aspects, physical, mental, cognitive, sensory, make sure there is access to all types of professional help.nUse a database or accessible library where people can search and find the support they need for each aspect of their conditions. ------------------------- Questions and Answers Q1: What is the impact of social stigma on individuals with disabilities and mental health conditions? Answer: Stigma can lead to social isolation, which exacerbates mental health problems such as depression or anxiety. For people with disabilities, this can create a vicious cycle where mental health conditions worsen the disability, further increasing stigma and social exclusion . Efforts to reduce stigma include community education and policy changes that promote inclusion and anti-discrimination laws. ------------------------- Q2: How can mental health services be more accessible to individuals with disabilities? Answer: Mental health services can become more accessible through: * Physical Accessibility: Ensuring clinics, therapy offices, and hospitals are wheelchair-accessible. * Communication Tools: Providing interpreters for the deaf or individuals with speech impairments. * Technology: Offering teletherapy or online counseling to accommodate those with mobility challenges or other physical disabilities . ------------------------- Q3: What role does early intervention play in managing mental health among people with disabilities? Answer: Early intervention is critical in mitigating the impact of both mental health and disability. Identifying and addressing mental health issues early can prevent them from becoming disabling. Programs that provide early mental health support, especially for children with disabilities, can improve developmental outcomes and promote long-term well-being . ------------------------- Q4: How does mental health legislation support people with disabilities? Answer: Legislation like the Americans with Disabilities Act (ADA) in the U.S. mandates that employers, schools, and public institutions provide reasonable accommodations for people with disabilities, including those with mental health conditions. This could include flexible work hours for someone with depression or anxiety, or assistive technology for those with cognitive impairments . Mental health parity laws, which require insurance companies to cover mental health treatment in the same way they cover physical health, also play a vital role. ------------------------- Q5: What are some strategies for reducing mental health disparities in people with disabilities? Answer: Strategies include: * Culturally competent care: Mental health professionals should be trained to understand the unique challenges faced by people with disabilities, including those from diverse cultural backgrounds. * Policy advocacy: Advocating for policies that promote accessibility and inclusion in all areas of life—employment, education, and health care—can reduce disparities. * Peer support networks: Creating spaces where people with disabilities can connect with others facing similar challenges can provide emotional support and reduce isolation .
dapperSouth8372 profile picture
stuck
by dapperSouth8372
Last post
 October 30th, 2024
...See more Waited 2 and a half years for a disability insurance company to correct the amount on my benefits. Hired a lawyer back then finally. They paid my backpay for my benefits a week ago, BUT, now they have lost all my medical records. Doctors won't take my money or make an appointment to have my leg appliance replaced because I can't give them my medical records. Called some ( total of about 19 Doctors since the injury ) of my past Doctors to try and get my medical records myself but they say they have purged them because in Texas there is a 5 year time limit that they have to keep them, OR, they say I have to have the procedures done again if I can't come up with medical records when they were done the first time. The disability insurance company says they are looking for my records but it's going to take another 2 years ( my best guess ) to get these jokers to do anything about this, gauging from the fact it took them 2 and 1/2 years and a lawyer getting involved to correct my disability benefit. Timing of when they lost my records is very suspicious too. Can anybody give me advice on what to do next? I feel like I am just sitting here with no idea of what my rights are or what to do about this.  Was able to contact 3 of the 19 Doctors who have said they do still have some of my injury records, but I will need to pay them a fee to send them to me.  Other 16 basically say, they either purged the records because of age limit, or they sent the records to the aforementioned insurance company when the injury happened.  

Welcome to the Disability Support Community!

This is an inclusive community where people can seek and provide support and post about topics related to learning disabilities, chronic pain, chronic illnesses and conditions, physical disabilities and developmental disabilities. You are welcome to join in even if you don't used disabled as a label for yourself.

There are a number of ways to get involved and be supported. We have a pop up teen chatroom and a 24/7 adult chatroom.

There are guides for Chronic Pain and T2 Diabetes
There are Q&A sections for Disabilities and Chronic Pain

Members may connect with a listener who has disabilities, chronic pain, cancer, diabetes, adhd or autism listed as a topic and there are listeners with disabilities supporting people with disabilities. 

We encourage people to post new threads and respond to others in the forums! Some good ways to get started are to introduce yourself and to join our tag list to be notified of weekly check ins and events. We also have an Interview Series: if you would be open to sharing more about yourself and want to be interviewed.

Looking to be even more activity in the Disability Community? Join as a leader!

*Note we are inclusive of all disabilities but ADHD and Autism each of their own communities which may be of interest to some of you.

Community Guidelines

🌟 Please be respectful of everybody's thoughts and opinions.

🌟 Don't think you are alone, so please share

🌟 Please be patient if you feel like your concern hasn't been addressed yet; we are working hard to add more leaders and supporters.

🌟 If you have any concerns, reach out to a leader or make a post.

🌟 For Listeners only - please remember that you are here to give support, if you are seeking support then please switch to your Member account.

🌟 Most of all - don't forget to be awesome! You are loved and accepted here, no matter what!

Guidelines For Using AI 


We all want the Disability Support Community to be a safe place where people are able to be their authentic selves and receive support. We understand that AI tools can be helpful in reducing barriers, allowing people to better express themselves, and allowing those with some disabilities to be able to read, write, and post, but excessive, or complete use of AI can feel robotic and reduce supportive person-to-person interactions. It can also lead to false impressions of the poster. We want to try and avoid this and help our Community to be as inclusive and as welcoming as possible to all users.


What is AI?

AI is short for ‘artificial intelligence’ which is software, a program or algorithm that works to sort, order, and combine data to give a response or answer to a question or input. Artificial intelligence is the ability of a computer, software, or computer-controlled robot to perform tasks that are commonly associated with the intellectual processes characteristic of humans, such as the ability to reason. As yet no AI’s match full human flexibility over wider domains or in tasks.

Some of the most common examples of AI in use today include: 

  • ChatGPT: Uses large language models (LLMs) to generate text in response to questions or comments posed to it. 

  • Google Translate: Uses deep learning algorithms to translate text from one language to another. 

  • Netflix: Uses machine learning algorithms to create personalized recommendation engines for users based on their previous viewing history. 

  • Tesla: Uses computer vision to power self-driving features on their cars.



If using AI tools please adhere to the following:


  • Include some of your own personal expression. This could come from a detailed, personal prompt to the AI tool or include some of your own words with a post.

  • Cite which AI tool(s) you used, which applies both to AI-generated and AI-edited text as well as images too. For instance, if you use Dragon to voice type then say so and if the text is AI-edited include that fact too.

  • Avoid posting misinformation. AI sometimes creates personalized anecdotes, facts, or references. If you are sharing an experience, don’t post an AI-fabricated one. If posting information check that it is correct and aligns with trustworthy sources.

  • Cite the source of your information. It can be important to know and understand the source of information posted, AI-generated content may draw information from their database so try and use factual sites that can be checked and that aren’t misleading.

  • Don’t make threads in excess. AI can make it fairly quick to create a lot of content. We want to give everyone’s posts a chance to be seen. Please don’t post a large amount of threads in a short period of time, this is called ‘flooding’ and can prevent other posts from being seen.

  • If you do feel like there’s a lot you want to state on one topic, consider making multiple posts within the same single thread. Or create your own ‘Disability Diary’ thread and post there, this will increase your visibility, and those who reply will be notified when you add another post.

  • Follow the guidelines. You are responsible for what is posted from your account, even if AI was used in the creation of the post, so please double-check what you write and post!


For more information please read this post by @Heather225 - 7 Cups Community Director.


Do’s ✅  and  ❌ Don’t List:


✅ Do - Humanize your post with your own expression and words

✅ Do - Cite the AI tool(s) you use

✅ Do - Make ONE thread and post to it if there are several posts you want to make

✅ Do- Read things over and ensure the guidelines are being followed

❌ Don’t post something that is entirely AI-generated with little input from yourself

❌ Don’t post misinformation

❌ Don’t flood the forums with AI threads, or multiple threads


If in doubt please ask @MistyMagic  (Adults and Teens) or @AffyAvo (Adults) or consider joining the Disability Community Support Team. More information Here







Read the 7 Cups Guidelines
Community Leaders
Community Mentor Leader
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@MistyMagic
Community Mentor / Teen Community Star
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@AffyAvo
Group Support Mentor / Teen Star
MistyMagic profile picture
@MistyMagic
Room Supporter
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@compassionateMoon4024