CRPS Network Australia in Cannington, Western Australia | Non-profit organisation

CRPS Network Australia

Locality: Cannington, Western Australia

Address: PO Box 143 6987 Cannington, WA, Australia

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25.01.2022 "I can remember the exact emotions I felt in that moment, and I can remember the fear I felt the day upon receiving my diagnoses. I didnt know that they would be life-altering. "Each day, I find my mind going back to the same thing. I keep wondering why, after all of this time, I still am in mourning of my pre-sick self. Maybe Im sad because I never got to say goodbye to who I used to be; I was so happy and had goals I wanted to achieve. "With the help of a therapist, I h...ave been through the cycle of grieving and accepting my chronic illnesses multiple times, but I dont know that Ill ever be completely OK with my situation. Ive actually come to a point where I dont even tell people anymore how Im actually feeling when they ask because I feel like a broken record and a broken soul that can never be fixed. I have accepted that no matter how many times you try to tell others what you are feeling and experiencing, they may never truly understand. You may lose important people in your life as you have to say no to many outings, but those who honestly are sympathetic to your situation will stick around." See more

25.01.2022 "One of my biggest struggles with chronic illness was learning to say no. I went from being someone with a very active social life to someone who had to plan even the smallest events with absolute precision. I quickly learned that chronic illness was a factor in every decision I made. "My health declined as a result of pushing myself too far, for too long. In those early days my health wasnt a priority. I was determined to push on as if nothing had changed, but things had ...changed. Learning to say no was vital to protecting my remaining health, yet I still struggled to say that word. Fear and guilt won every time I was faced with a task or event that I wasnt well enough to cope with. I was afraid of losing my friends, my social life and my sense of self. On the rare occasions I did say no, guilt reigned and consumed me. It was a relentless circle, and one which caused me a great deal of harm. "It took me a long time to get comfortable saying no, and to let go of the guilt that used to accompany that word. "Perhaps the most important thing I learned in those early days of chronic illness was that saying no was a form of self-care. It was so difficult to learn to prioritise my health, but I realised I had to. If I didnt my health would only get worse."

25.01.2022 "I am struggling. I am struggling because there are so many moments I wonder, Why is my body, my home, at war with me? "When the pain returns, you may hope its simply a flare. And then that flare lasts days and weeks, and before you know it, nearly a month has gone by. "

24.01.2022 "12-year-old Chloe lives with extreme physical pain. Its so bad that sometimes she wishes she could just die. "Some people think Chloe is faking it, but others who suffer from Complex Regional Pain Syndrome (CRPS) know her pain is very real. CRPS is an often-misunderstood debilitating ailment that usually affects a limb, after an injury. "Some days I feel like I am dying. Some days I wish that I actually would die when the pain gets so bad.... I wish I could chop my leg of...f so the pain would just go away. The skin from my toes to my knee can feel like its on fire, like Im being burned alive." "Recently my CRPS spread into my chest. It started as bad stomach pains, then my head got sore and my nose started bleeding, and my chest started to feel like electricity was zapping through it. "It makes me really scared when I think about being in pain forever, that it would be easier to have my leg chopped off or just die. I hope one day doctors work out how to fix damaged nerves, I really wish the pain could go for good and no one else has to feel as bad as I do most days."

22.01.2022 CRPS Warrior! The levels of pain for someone living with Complex Regional Pain Syndrome are much higher than most people realise. If we were to act in the manner of the average person experiencing our pain level, we would probably stay in bed moaning or, more likely, go to the emergency department seeking pain relief.... This for us however, is unrealistic. We can either choose to push through the pain and participate in life to the fullest extent that we are capable, or sit back and watch as life passes us by. #CRPS #CRPS2020 #CRPSstrong #CRPSwarrior #RSDwarrior #RSDstrong #ComplexRegionalPainSyndrome #CRPScureNow #CRPSangels #CRPSsucks #CRPSwarriors #CRPSwontBeatMe #Strength #resilience #determination #CRPSawareness #RSDawareness #CRPSaustralia #CRPScharity #CRPSreallyGetsOnMyNerves #CRPSnetworkAus #YourCRPSna

22.01.2022 Support Complex Regional Pain Syndrome awareness month with a CRPS warrior keyring or lapel pin. All sales help to support those living with CRPS. www.crpsnetworkaustralia.org.au/shop... #CRPS #CRPSawareness #CRPSawarenessMonth #CRPSkeyring #CRPSbadge #CRPSreallyGetsOnMyNerves #CRPSnetworkAus #YourCRPSna

21.01.2022 Just because I was able to do something yesterday does not mean that I am capable of doing the same thing today. With Complex Regional Pain Syndrome (CRPS) you never know how you are going to feel from day to day. Any activity can also cause a pain flare that can last anywhere from a couple of hours to a few days or weeks. Please be understanding about the fact due to my illness my level of ability can change dramatically.... #CRPS #CRPS2020 #CRPSstrong #CRPSwarrior #painflare #spoonie #spoontheory #ComplexRegionalPainSyndrome #GETLOUDaboutCRPS #CRPSawarenessMatters #NervePain #Painsomnia #CRPSbrave #CRPScapable #CRPScharity #CRPSaustralia #StrongerTogether #CommunityFirst #charity #CRPSreallyGetsOnMyNerves #CRPSnetworkAus #YourCRPSna

21.01.2022 "To the people who dont know what to think or say about my life with ... chronic pain, its OK. I have no expectations. Its too exhausting trying to explain and please others. My comfort and happiness must come first as must yours. We can all take better care of each other if we take better care of ourselves. "That being said, I secretly wish you could live in my body for just one day. I dont want you to suffer, but a day in my shoes would help you better relate and make... me feel more understood. Heres what I believe youll learn about life with ... chronic illness. "Im still a worthwhile human being. I still want to enjoy work, family, friends and leisure activities, but I feel stuck inside a body over which I have little to no control. Doctors appointments, treatments, medications, anger, worry, frustration and fear are all part of my every day life. "Making plans is often uncomfortable ... I may not be feeling up to following through. Ive also become sensitive to certain stimuli, such as bright lights, noises, crowds and smells, so I carefully pick and choose my activities. "I may not know how well I will feel each day, let alone hour to hour some days ... When I say Im fine, it doesnt mean Im not experiencing pain or discomfort ... Getting out and doing things doesnt make the pain vanish and can often exacerbate my symptoms. "If listening to the details of my condition makes you uncomfortable for a short while, consider this: what is your short-term discomfort of lending an ear compared to the long-term, chronic discomfort of a friend or loved one?"

21.01.2022 "Going out into the world with chronic illness can sometimes be a scary thing. You dont know what you might encounter that will set off a flare, and unfortunately, people may do things that they dont even realize are harmful to you. Little things they do without a second thought, like spritzing on perfume, turning up the TV or giving you a hug can add more pain and discomfort to your day (even if they had the best intentions!). "Few people besides others with chronic illnes...s truly understand how these little things can lead to major consequences... perhaps this list will help you understand what you can do to make their lives a bit easier." Having the TV on, talking loudly, or listening to music/watching videos on their phones. Im prone to sensory overload (everything gets louder, brighter, and smells get stronger) and when it happens, even just some quiet TV on in a waiting room, for example, is too much for me to handle and the noise makes all my other symptoms worse. Being slightly sick around me. Most people dont know that when a scratchy throat starts or they start feeling slightly under the weather they are at the most contagious stage. Their bodies fight off the bacteria or virus quickly, whereas I, being immunosuppressed, get really sick from that slight exposure to the virus or bacteria." Uninvited drop-ins. You said you werent feeling well, so I wanted to stop by. No, no, no please dont. Though they mean well and have nothing but good intentions, frequently asking me how Im doing, how Im feeling. I work hard to remain positive and distract from the constant pain and health issues, and these questions serve as a reminder when I am just tired of being defined by my health.

21.01.2022 "I would rather spend the rest of my days banging my head against a wall than to continue trying to explain to people that their essential oils and kale will not cure me. OK, Im being dramatic, but not as much as you might think! "Seriously, there was a period of time at the beginning of me being sick that I desperately held onto the belief that I had control and would get better, so I tried anything and everything anyone presented to me. The worst was this joint juice con...coction my dad ordered off an infomercial that tasted worse than words can describe. Yuck. "When people constantly offer up these things, especially after Ive spent time telling them my story, it doesnt come off as helpful. I know, I know. People generally mean well. Sure. Id like to say I believe that. But theres condescension there almost always. And disbelief. And disrespect. Its a smack in the face. Its basically people saying to me that I just must not be doing enough or else Id be better. "Trust me, I wish it was that easy. I want to get better. I do. Like I said, Ive tried it all. I really have. And I truly believe that various alternative treatments and things like diets and exercise regimens can help. Help, not cure. "While I appreciate people thinking of me and meaning well by offering up advice, when its unsolicited, Id rather just have the emotional support instead. And I can almost guarantee that Ive tried whatever youre suggesting. So thank you for the desire to help, but Id love to just have you there to support me instead."

21.01.2022 "Anyone living with a chronic illness has experienced a flare. And so, would agree when I say how difficult and distressing it can be experiencing one. It can be an extremely dark time, but what happens when the current eruption of disabling symptoms start to dissipate into the ether? "Experiencing a severe and debilitating flare can make you feel like life is on pause. Energy and strength, everything that usually helps you continue despite persistent symptoms from chronic il...lness are in scarce supply. As such even getting out of bed or having a shower requires a considerable amount of energy. Days spent rationing the limited power that we do possess. There is no energy to live, only just enough to survive the days ahead. "When coming out of this current flare, we begin to see the light at the end of a dark tunnel. Every flare is different, and as such, we react differently to each one. And as we come out of a flare, there is a fear of doing too much supposing that doing so will exacerbate symptoms, causing another flare. "No one likes to be, or indeed feel unwell. To be constantly sick and continuously feeling the effects of debilitating symptoms is exceptionally unpleasant. We are continually investigating ways in which we can improve our symptoms, even just a little. Investigating new measures we can undertake to lessen the severity or even the number of flares. Doing so, would drastically improve our quality of life and able us to experience life."

20.01.2022 "The burden of chronic pain affects home life between patients and their spouses, adding stress to the relationship and with up to 20% of partners saying their employment had been affected in some way. "The recently published study, appearing in the European Journal of Pain, sought to probe the extent of the impact of chronic pain in households, including not only on occupations but also chores and marital satisfaction. "Spouses provide informal caregiving for all types of il...lnesses and for all types of family members, and caregiving in general is known to create a great deal of stress. "More patients (27.2%) than spouses (22.8%) reported having a troubled relationship, and nearly 52% of spouses reported a high to severe degree of burden. "Understanding these issues could lead to targeted interventions that would benefit the caregiver as well as the patient, the researchers said."

20.01.2022 Imagine waking up in severe, unrelenting pain every morning. Imagine having to give up everything you love. Imagine the hug of a loved one causing immense pain.... This is the reality for many people living with Complex Regional Pain Syndrome (CRPS). #CRPS #CRPSawareness #CRPSawarenessMonth #CRPSreallyGetsOnMyNerves #CRPSnetworkAus #YourCRPSna

19.01.2022 "If only our lives were more predictable and certain, wed feel a greater sense of security and safety. Yet, much of what happens to us is beyond our ability to control. This is because everything is constantly changing. Impermanence is a universal law, and uncertainty is one of its corollaries. No one is immune from lifes uncertaintythe rich, the poor, the healthy, the sick. But for the chronically illwhich includes those who suffer from chronic painit can feel as if unc...ertainty permeates everything we do. "We spend a lot of time figuring out whats best for ourselves. On the one hand, we dont want to over-commit to others and then have to cancel. On the other hand, we dont want to unnecessarily isolate ourselves too much. This constant need to assess whats best for us to do is hard and exhausting work. In the end, because of the uncertainty of our symptoms, most of us must simply make an educated guess and hope for the best. "The unpredictability of how well be treated by others can be extremely stressful. Will they understand that chronic illness hasnt turned us into children? Will they speak to us in a pitying voice? Will they shy away from meaningful interaction altogether, as if were contagious? "Most of us dont know what course our chronic illness will take. Will we stay the same year after year? Will we get progressively worse? Or, will we wake up one morning and not be in pain or feel sick anymore? Because we dont know the answers to these questions, its hard to plan for the future. This uncertainty is particularly stressful when its in relation to long-term decisionsfor example, how long we might be able to live independently. "Upon getting up each morning, we can reflect on how we cant be certain if the day will unfold as we think it will and then resolve to greet it nonetheless with curiosity and wisdom. Greeting the day with curiosity means being interested in what each moment has to offer. And greeting it with wisdom means not turning away in aversion from our experience, even if its unpleasant and even if its not what we had hoped for."

19.01.2022 GASTROPARESIS AWARENESS MONTH! Gastroparesis is a problem for most long term Complex Regional Pain Syndrome (CRPS) patients who have the disorder in multiple limbs, especially if their lower extremities are affected more greatly than their upper extremities. It is a dysfunction of the autonomic nervous system, and in serious cases it can lead to Gastroesophageal Reflux Disease (GERD) and malnutrition.... If you think that this may affect you, please seek medical advice. #gastroparesis #paresis #GERD #ParalysisOfTheStomach #CRPS #GastroesophagealRefluxDisease #AutonomicNervousSystem #RSD #CRPScureNow #CRPScharityAus #heartburn #vomiting #diarrhoea #constipation #fatigue #GetLoudAboutCRPS #AbdominalSpasms #Weightloss #WeightGain #malnutrition #CRPSstrong #CRPSreallyGetsOnMyNerves #CRPSnetworkAus #YourCRPSna

18.01.2022 "Sometimes it takes almost an hour to be able to move enough to get up.... The shower randomly feels like hot acid being sprayed on my skin, my feet and hands feel like theyre on fire and its hard to shampoo my hair since it hurts to raise my arms up to my head. I often go days without showering if Im not going out. I have to rest for a bit after showering and other seemingly normal household chores and activities because Im fatigued from the exertion and strain. "Sleep... can also be difficult at times since I cant always get comfortable due to my body aches and muscle pain. There are the sleep issues, where it can come in short bursts or not at all some nights. I am almost always tired as well as fatigued all day from this. "I take dozens of medications, supplements and vitamins because my body cant function without them. They can make me gain unwanted weight and are not cheap! "I usually dont really look sick in public. Its covered up with makeup and I fake feeling good by forcing myself to laugh, smile, not wince in pain, limp or stumble, and I act as though everything is great. Its all a painful lie and I struggle in silence. "When I talk about my illnesses I am not looking for sympathy. I am looking for a kind ear, moral support and understanding. Its called an invisible illness for a reason, and its very real! "I struggle with chronic pain every minute, hour, day, week and month, and will for years to come."

18.01.2022 Pharmacists are adding up to five additional charges to the price of prescription medicines that nearly quadruple the cost. A News Corp Australia investigation has found the problem has been made even worse by a new agreement reached in secret between the Pharmacy Guild of Australia and the federal government. The price of the most commonly used prescription medicines plummeted after they came off patent in recent years, with 14 of the most common prescribed drugs now cost...ing less than $6 when they leave the manufacturers door. Some, like the antibiotic amoxicillin cost as little as $1.20 per pack to produce. However, under a deal reached in secret between the Pharmacy Guild and the government, chemists are permitted to add five separate fees totalling $18.11 that can drive up the cost to more $20. Under the deal reached between the Pharmacy Guild of Australia which represents 3500 pharmacy owners and the federal government in June pharmacists can add on the manufacturerss price: *a wholesale mark up worth 41 cents (from January 2021) *an administration and handling fee $4.28 *a dispensing fee $7.74 *a safety net recording fee $1.29 *an additional allowable patient charge $4.39 Most people are unaware they could save up to $15 per script on their medication simply by shopping around. Thats around $180 a year if you take one regular prescription medicine but it could quickly amount to savings of many hundreds even $1,000 or more if you are on multiple medications. These huge saving can be made by general patients when the medicine they use costs less than $41. Heres how you can access those savings: Check out the cheapest medicine prices online at Chemist Warehouse, Your Discount Chemist, Pharmacy Online or other discount pharmacies and ask your local suburban pharmacist to match the price. Many chemists will do this if you ask, others may not. Find the nearest bricks and mortar discount chemist near you and get your scripts filled there. Make sure they are a genuine discount chemist by checking their prices against the prices charged by discount pharmacies listed above. Some pharmacies call themselves discount chemists but charge high prices for medicines If you live in the bush or an area without a discount chemist consider ordering your medicine online. If you use lots of medicine it can end up cheaper even if you have to pay for postage.

18.01.2022 #CRPSawarenessMatters #CRPSawarenessMonth #CRPSreallyGetsOnMyNerves #CRPSnetworkAus #YourCRPSna

18.01.2022 "People with chronic pain may be more likely to have a heart attack or stroke than those without chronic pain, according to a study published online May 7, 2020, by the journal Pain Medicine. "From 2001 to 2005, researchers identified 17,614 Taiwanese people who had used pain relievers for at least three months. "During the follow-up, which lasted until 2015, people with chronic pain were 20% more likely to experience a heart attack and 30% more likely to have a stroke than t...hose without chronic pain. Researchers adjusted the results for diabetes and other factors that raise the risk of heart disease. "What might explain the connection? Pain may trigger a number of factors linked to poor heart health, including stress, reduced ability to exercise, poor sleep, and depression, the authors say."

18.01.2022 "new draft guidance from the National Institute for Health and Care Excellence (NICE) that suggests painkillers paracetamol, ibuprofen, aspirin and opioids should not be prescribed to treat chronic primary pain (CPP), citing evidence they can cause harm, including addiction. "Chronic primary pain refers to chronic pain as a disease in itself, according to NICE. It includes issues such as chronic musculoskeletal pain, as well as chronic pelvic pain and fibromyalgia. In con...trast, chronic secondary pain is where the pain is a symptom of an underlying condition. "The draft guidance suggests theres little or no evidence the commonly used drugs for chronic primary pain make any difference to peoples quality of life, pain or psychological distress. "The NICE draft guidance suggests gabapentinoids, local anaesthetics, ketamine, corticosteroids and antipsychotics shouldnt be offered to people to manage chronic primary pain because, again, theres little or no evidence these treatments work. Instead, people should be offered supervised group exercise programmes, some types of psychological therapy, or acupuncture, it said. Antidepressants can be considered, too. "Many people who live with chronic pain want more treatment options and research on the table, rather than taking options that some have found to be beneficial away."

17.01.2022 "Its all so exhausting. Living with chronic pain. I dont know that people really understand just how exhausting chronic pain is, the toll it takes on us both physically and mentally. Its exhausting! Then you have to deal with the doctors, the appointments, the research, trying to explain things to family and friends, trying to manage all the things that you need and want to get done but never have enough energy to do, manging triggers...one never really escapes it. Its ex...hausting! "Sometimes I just wish I could take a vacation from it all. Maybe a month with no pain and none of the constant management of my conditions, no medications or special accommodations. Sounds greedy, doesnt it? A whole month of getting stuff done and having fun without paying a price or having it ruined by pain, brain fog, nausea... Gosh, that would be so wonderful."

17.01.2022 "I have a friend. A poisonous friend. "When she is angry, she makes my days hell and my nights sleepless. She attacks me when I least expect it, especially if Im lulled into a sense of security. She follows me everywhere, every day to the point where I truly cannot remember a time that I lived totally out of her clutches. "Shes been a silent witness to some of the most remarkable and agonizing moments of my life.... "Shes always here. "Her name is Pain. "But let me tell you a secret. It hurts! It never stops. You wake, it hurts. You rest, it hurts. You do some basic physical activity, it hurts. You eat, it hurts. "See, constant and chronic pain isnt something you magically get immune to. If I kicked you in the shins wearing my boots every 10 minutes, you would not be desensitized after the hundredth kick, would you? "You dont get magically used to pain. "We learn fast. To tell you of pain, and the misery she brings, often eventually creates anger, resentment, ill-treatment, impatience, and out and out rudeness. At first its all sympathy. But I dont want that! Empathy! Thats what I need. Not the (not-very-discreetly) rolled eyes and mutterings. "This is why I protect you. Because to one who hasnt experienced chronic, disabling pain, to show that I hurt appears to diminish me, to be a weakness, a failing. Its humiliating to justify my pain, so I seldom choose to do so. "The best thing that you can do for a friend or loved one who also lives with pain is to realize that pain hurts! "Pain moved in uninvited. We didnt ask for her or welcome her. She is something inflicted on us entirely against our wishes. So please dont punish us for something we have zero control over. And learn to listen to us, and hear what may be underneath our just a bit sore and Its OK. That means more than anything." https://themighty.com//letter-to-people-who-think-chronic/

17.01.2022 "Part of living day-to-day with chronic illness is learning to cope with a flare in symptoms. "#1: Dont fight it "This is one I have to remind myself about every time Im in a flare, because my first reaction to it is aversion: Go away! I dont want to feel this lousy. But ordering a flare to go away has never worked for menot once. Not only that, but fighting it tends to make things worse because it adds a layer of mental stress to the difficulty youre already experienc...ing. Fighting it can especially affect pain levels, sending them sky high. "#2: Dont blame yourself, even if your actions caused the flare "Sometimes I cant pinpoint the cause of a flare. Other times I can. When I can, its almost always because I continued with an activity for too long. If you realize that a flare is due to your own actions, dont blame yourself. Its natural for you to sometimes go over your limits; blaming yourself for it serves no useful purpose. "#3: Postpone all non-essential tasks "When Im in a flare, my ability to concentrate can become non-existent. In addition, it takes more energy than usual to do the simplest things. And yet, some life tasks cant be ignored. When your symptoms flare, I suggest you make a list of things you think you have to , and then prioritize it by putting your absolute have tos at the top of the list. "#5: Reduce stress as much as possible "Even during a flare, Ive never been able to eliminate all stress from my life (if youve figured out how to do that, tell all of us your secret!). But I can reduce ita little here, a little there. It could mean gently reminding yourself that all those non-essential tasks youve put off for another day really are non-essential."

16.01.2022 "Prenatal testing for genetic disorders is common. But genetic testing is also increasingly used to determine the risk of developing certain diseases or potential responses to specific drugs. "Currently, little is known about how to use genes to make an individual more or less sensitive to pain, or to learn the likelihood that someone will respond in a particular way to an analgesic based on their genetics. The good news is that we are on the cusp of gaining more information ...about the genes that control pain and pain treatments, and that knowledge should allow us to develop targeted pain therapies. "Most physicians still believe that everyone experiences pain in the same way. Research recently published in Current Biology discovered a genethe so-called "Neanderthal gene"that is associated with increased sensitivity to pain. Recognizing that a mutation of a specific gene can influence pain perception may be illuminating for many members of the medical profession. "Optimal pain relief requires recognition that each individual responds uniquely to a given analgesic. Doctors are beginning to provide gene therapy for cancer patients. Advancements in research may someday allow us to do the same for patients with pain."

15.01.2022 Complex Regional Pain Syndrome is often associated with substantial disability, loss of quality of life, and great personal and societal economic burden. #CRPSawarenessMatters #CRPSawarenessMonth #CRPSreallyGetsOnMyNerves #CRPSnetworkAus #YourCRPSna

15.01.2022 Complex Regional Pain Syndrome (CRPS) is about more than just pain... #CRPSawarenessMatters #CRPSawarenessMonth #CRPSreallyGetsOnMyNerves #CRPSnetworkAus #YourCRPSna

15.01.2022 "People with chronic illness have a profound strength to manage life while in pain. "They have a relentless will to live, so they must dive deep into their reservoir of strength to mine more of it every single day they are faced with the challenges of their pain. They dont give up, despite the debilitating symptoms they experience. "People with chronic illness tend to have an astute awareness of other peoples pain.... "Because they have endured their own difficult road of affliction, they may be more in tune to the people around them. They can have extraordinary empathy and compassion for others and a deep understanding of adversity and hardship, so they can truly appreciate someone elses struggles. "People with chronic illness often dont tell people when they are struggling. "Because they are sick so often, they may not want to burden others regularly. They might struggle alone because they hate to make people feel uncomfortable or obligated in any way. Many times, you might notice they disappear for a time they could miss regular events, social activities, or friends and family gatherings. This is often when they are trying to manage their symptoms and are too sick to do much else. Their disappearance sometimes goes unnoticed. This is quite possibly the hardest part of being chronically ill. "People with chronic illness live a secret life of struggling. "They may not look sick at all, but underneath their appearance there is a person fighting fiercely to be well. They may fall apart as soon as they get home, after keeping the facade for hours wherever they were. They may have taken enough medicine just to get them through the day. They may mask their pain with smiles so others wont notice their struggling. "People who endure long-suffering are in all of our lives. Lets make sure we walk alongside them with the love and support they deserve. "Who has chronic illness in your life?"

15.01.2022 "Youve probably tried everything you can think of to manage your pain. But have you ever taken a long, hard look at your diet? "If youre eating foods that are considered inflammatory, such as fried foods, sugary foods, and processed foods, these could be the reason why youre not feeling 100%. The good news? An anti-inflammatory diet may help reduce your pain."

14.01.2022 "Living with a chronic illness can be very frustrating and it comes with a multitude of challenges. One of the most challenging aspects for me is the notion of acceptance. I used to wrongly see acceptance as a form of giving up. If I stop fighting everything and just accept things as they are, isnt that the same as giving up? The simply answer is no. Acceptance is not giving up, its simply an acknowledgement of the situation. Acceptance is saying, Okay, heres the situation. I accept that I am here. Its about recognising your limitations and being at peace with how things are right now. Its about focusing on what you can do rather than what you cant do. Its about acknowledging your flaws and learning to accept the person you are right now.

13.01.2022 Complex Regional Pain Syndrome - it really is about so much more than just the pain! Being diagnosed with a chronic illness means that you take on a whole lot more than what you would with an acute injury or illness that clears up quickly, such as the common cold. With a chronic illness like CRPS there are so many more symptoms, complications and social issues that come hand in hand, it can literally make your head spin.... #ItsMoreThanJustPain #LimbicSystem #Depression #CardiacComplications #Painger #SupportGroup #CommunityFirst #Anxiety #CPRS2020 #CRPS #ComplexRegionalPainSyndrome #CRPSaustralia #Spoonie #CRPSpain #ChronicIllness #CRPSawarenessMatters #GETLOUDaboutCRPS #Worry #CRPScharity #CRPSreallyGetsOnMyNerves #CRPSnetworkAus #YourCRPSna

12.01.2022 "Its true what they say pain changes youirreparably and in ways you cannot even imagine. "There are now two sides of myself. The side that can no longer take a single moment more of the agony pain brings, the kind of pain that demands to be felt, that leaves you screaming inside And then there is the side of me that knows this cannot be how my story ends! "Days fade and bleed into one another. Minutes begin to feel like hours, hours like days, days seem like weeks, and w...eeks feel like yearswith only one remaining constant: pain. "They say a drop of water on a stone doesnt do much, but a constant drip eventually erodes and changes the shape of the stone forever. And that is what pain has done to me. Thats part of what people dont understand about chronic pain, is that it eats away at you day after day, month after month, year after never-ending yearuntil you begin to wonder if there will even be any piece of you left."

11.01.2022 "Something like a quarter of the worlds population suffers from chronic pain at some point in their lives. As opposed to acute pain for example, the feeling after hitting your finger with a hammer chronic pain may not even have a clear cause, and it can linger for years or lifetimes. The burden of chronic pain includes damage to mental and physical health, lower productivity and drug addiction. A new study led by scientists at the Weizmann Institute of Science suggests a...n original approach to treating this affliction, by targeting a key gateway leading to the activation of genes in the peripheral nerve cells that play a role in many forms of chronic pain. The findings of this study were published in Science. "Pain starts in the sensory neurons those that pass information from the skin to the central nervous system. Damage to these neurons, chronic injury or disease can cause the neurons to short circuit, sending continuous pain messages."

11.01.2022 Hands up if youve ever been caught in the pain/depression- depression/pain roundabout! "Pain and depression are closely related. Depression can cause pain - and pain can cause depression. Sometimes pain and depression create a vicious cycle in which pain worsens symptoms of depression, and then the resulting depression worsens feelings of pain. "Pain and the problems it causes can wear you down over time and affect your mood. Chronic pain causes a number of problem...s that can lead to depression, such as trouble sleeping and stress. Disabling pain can cause low self-esteem due to work, legal or financial issues. Depression doesnt just occur with pain resulting from an injury. Its also common in people who have pain linked to a health condition. "To get symptoms of pain and depression under control, you may need separate treatment for each condition. However, some treatments may help with both: "Antidepressant medications may relieve both pain and depression because of shared chemical messengers in the brain. "Psychological counseling (psychotherapy), can be effective in treating both conditions. "Stress-reduction techniques, physical activity, exercise, meditation, journaling, learning coping skills and other strategies also may help. "If you have pain and depression, get help before your symptoms worsen. You dont have to be miserable. Getting the right treatment can help you start enjoying life again."

09.01.2022 Painsomnia is a very common and frustrating symptom for people living with Complex Regional Pain Syndrome (CRPS). When you are particularly bad, you can be so tired that you are practically pulling out your own hair, yet be completely unable to get any sleep. No pills, potions, meditation, relaxation or sleep therapy of any kind help. All you can do is wait until your body finally gives in to the inevitable, however many hours or days that may take, and you hopefully get a c...ouple of blessed hours of actual sleep! #CRPS #CRPS2020 #CRPSstrong #CRPSwarrior #ComplexRegionalPainSyndrome #GETLOUDaboutCRPS #CRPSawarenessMatters #NervePain #Painsomnia #CRPSbrave #CRPScapable #CRPScharity #CRPSaustralia #StrongerTogether #CommunityFirst #charity #CRPSreallyGetsOnMyNerves #CRPSnetworkAus #YourCRPSna

07.01.2022 "Complex Regional Pain Syndrome, CRPS, leaves its victims in excruciating pain with the feeling they are in the midst of a lonely, uphill battle with no end in sight. CRPS occurs most often after trauma to a limb. An inflammatory condition, the nerves misfire, sending constant pain signals to the brain. The pain is so great, victims have nicknamed it the suicide disease. "It is officially considered a rare condition. However, it has reached people of all races and ages, including well-known individuals who have spoken out about their experiences."

07.01.2022 This week is one that CRPSna should have been celebrating as we held the first ever Australian CRPS Conference. A 2-day dual stream event focusing on the latest in CRPS research worldwide and targeting specific prevention programs. Educating health professionals and students, emphasising the importance of early diagnosis and treatment and providing a stream dedicated to CRPS community education and support. We were very excited about our young Australian speakers for our br...eakaway teen and young adult session. Several months work over the course of last year and the beginning of this year by our dedicated CRPSna team the CRPSna Events Manager and the Conference Committee went into proposals to secure a venue, along with 3 well respected international CRPS experts in various fields. We established budgets, timelines, vendor information and applications, setup the conference website, registration and payment systems and much more. We were about the announce the conference at the beginning of February when we started to hear about a new disease in China that was just starting to be spread in other places around the world. There had been 1 reported case in Australia. We decided to postpone our announcement. 6 weeks later on the 11th of March we officially cancelled the event. It is hoped that sooner, rather than later, our borders will open and we can bring these experts to an in person conference that is safe for our community to attend. In the meantime, we will have to find other ways to provide the same education and support and to influence government and health department policies. We would like to acknowledge the hard work put in by the entire team and thank them all very much for their work. We are extremely grateful for all of their efforts. xx #CRPSconference #CRPSnaConference #CRPS2020 #MakingADifference #CRPSawarenessMatters #ComplexRegionalPainSyndrome #CRPSaustralia #CRPSreallyGetsOnMyNerves #CRPSnetworkAus #YourCRPSna

05.01.2022 "Many of the challenges turn out to apply to the restricted lives all of us are leading in light of COVID-19, no matter what the condition of our health was when we began sheltering-in-place in March. "I know from experience that nothing positive comes from directing blame at yourself. When it comes to chronic illness (which includes chronic pain), its crucial to remember that you are not the enemy. Anyone can get sick, physically or mentally, and anybody can develop chron...ic pain. Chronic pain and illness come with the human condition. Its not your fault when they come calling. Dont make things worse by adding self-blame to the mix. Instead, add self-compassion to help alleviate your emotional suffering. "Anyone who has a chronic health condition knows the feeling of frustration due to the relentlessness of symptoms. I can now add frustration due to the relentlessness of sheltering-in-place. In both instances, if youre like me, there are days when you cry out, Enough is enough! Although it can be good to let off steam once in a while in this way, treating your health or your life as the enemy is not good for your emotional well-being. "Most people dont realize that someone can look fine but be chronically ill, physically or mentally. This attitude can lead family and friends to refuse to believe what youre telling them. I call it a heartache because thats how it feels."

05.01.2022 "When Nadine Curtis tore a ligament in one of her legs in 2015, she had no idea it would ultimately lead to a life of chronic pain. After further injury and multiple operations, Nadine was diagnosed eight months ago with complex regional pain syndrome (CRPS). The 29-year-old mother of two now suffers from constant pain in both legs. "The pain, which Nadine describes as a burning, stinging sensation, far exceeds that of giving birth. It cant be compared, she says. Ive n...ever felt pain like this before. Walking is now pure torture, like someones running a knife through both my legs. The pain overrides a lot of my life, she says. She tries to be happy for the sake of her young children, but often feels on edge. I cry, I get quite snappy, and Im very intolerant with things. "Shes also had to give up her job as an education support worker and mourns the fact she cant see herself returning to the workforce any time soon. She likens her experiences with chronic pain to grieving. Some days you accept it, some days you go, Why me?

05.01.2022 "Living With Chronic Pain Isnt Just About Living With Pain "Families can become frustrated. Sometimes they cant understand why the pain cant be cured with some extra strong headache pills. Sometimes they cant cope with seeing them in pain. Sometimes they might not believe that the pain can be so controlling. And sometimes they want a more reliable relative. Sometimes they too just drift away. "When someone has chronic pain, their pain dictates what they can and, more of...ten, cant do. They cant always go for that coffee when a friend asks. They arent always able to go to a family wedding. They may not manage to go to their own mothers birthday party. "Close, intimate relationships are affected too. It takes an understanding person to cope with their partners chronic pain. They often need to accept nothing more than a gentle hug, put up with the days when showering is impossible and give help to do simple daily tasks including washing and dressing. They see the moods, the frustration and the tears. Their partners pain affects them so much, that it actually becomes their pain too. The couple needs to share it. They need to endure it together. But sadly, for some couples, that becomes too difficult. "A person with chronic pain often needs to justify themselves to other people. Their pain might not be visible. People might not believe them. Family. Friends. Colleagues. Benefit agencies. Insurance companies. Even doctors. They are living a daily nightmare and people dont believe them. A horrible thought? But it happens over and over. Theyre told the pain cant be that bad; that theres nothing wrong with them; that theyre just lazy. How low could that make someone feel? How demoralising? "Chronic pain has such a huge impact on peoples lives. It can sneak in and it can snatch away so much. Careers. Plans. Dreams. Friends. Families. But it cant be allowed to take everything. "Hopefully one day, better solutions will be found, but until then, lets hope that medical professionals will recognise that there is more to chronic pain than just the pain."

04.01.2022 "Staying at home has been a strange time for many us, and perhaps more so when you live with chronic illness. While we are often used to being home either entirely or more often than others, the climate in which we are doing so feels very different. "I feel that I have learned a lot both about myself and how health is viewed by others. "These things I have learned about chronic illness during quarantine are those that have struck me most, from being used to being home to having the very unfair (to say the least) way that people with disability and chronic illness have been treated in the past (and present day) made very visible. We can only hope this overwhelming time leads to a positive shift in how chronic illness is viewed and people are recognized and cared for by others and society as a whole."

02.01.2022 "I call you a warrior, because thats exactly how I have come to view people dealing with chronic illness. These warriors display courage in the face of fear and the uncertainty that is a constant part of their life. They retain their compassion and propensity to look for good in the world despite being mistreated or ostracized by others. They smile through the pain and make jokes to help put everyone at ease when they are imploding inside. They become familiar with emotions ...and experiences many people may only see once or twice in their lifetime. "But unfortunately, warriors can also feel like a burden from time to time. Whether that feeling is prompted by the insensitive comment of a family member or a misinformed post of a Facebook friend, it can get us at our core. It harshly whispers, You are not adequate. You are different in a bad way. All that you are and all that you are able to do is not enough for the people you love and the society you live in. "But in those low moments, we must challenge that negative way of thinking. We must not let the misguided views of a few take up residence in our subconscious. "Dont waste a precious minute feeling like a burden. If we could change our situations, we would. Instead, lets advocate for one another and show people how wrong they are. And if the word burden somehow weasels its way into our heads, may we always quickly replace it with warrior.

02.01.2022 "Todays question is a doozie: Whats the hardest part of living with chronic illness? "The reality for me, and I assume for most people, is the answer to this depends on what day or even what time of day youre asking me. There are some things that have been consistently hard across this journey, and some things that have been so unbearably hard in the moment that I wasnt sure I would (or wanted to) make it through the day. "Long-term, nagging, chronic, never-gonna-recover..., chronic or progressive disease takes a toll in so many ways. One of the near ubiquitous outcomes of chronic illness is that it is isolating. Not only is the experience of being sick isolating as in, others around me are healthy, active and more able-bodied, but its isolating, too, in that I am often left behind, left at home, unable to participate and be involved in the world, community and life, in the ways I once was. "Also, accepting the label of disabled was so tough, seeing in black and white how incapacitated I am and acknowledging how broad reaching the impacts of my diseases are was devastating. I prided myself on being a good friend, a good partner, a reliable neighbor, an active volunteer, etc. and all of these identities came crashing down at the same time. Trying to figure out how to function in my new disease state while crawling out from under the wreckage of my past-life was crushing. "I havent even talked about the medical side of chronic illness from the difficulty of being believed, and trying to get a diagnosis, to what its like to spend huge chunks of your life being a professional patient."

02.01.2022 "Our sense of touch is a fundamental part of the human experience. Being touched by others a powerful tool of communication, whether it is through a handshake, a hug, or a pat on the back, and it can also boost a sense of general well-being. "Unfortunately, living with chronic pain can interfere with your ability to touch, feel, hold, or be held by others. One of the most challenging examples of this occurs when we develop extreme sensitivities to touch from things that aren’...t usually painful. The medical term for this is allodynia, and it means that something is painful from a non-painful stimulus. Imagine lightly brushing the back of your hand with a cotton ball. That should not hurt in the least, but now suppose doing so is all of a sudden associated with the feeling of intense pain in the hand. "One of the most common types of pain that can lead to something like allodynia is nerve pain, also known as neuropathic pain. One nerve pain syndrome, in particular, that is often associated with cantankerous forms of allodynia is complex regional pain syndrome, or CRPS. CRPS can be a debilitating pain problem that usually involves an extremity, like an arm or leg, after some type of tissue injury has taken place."

01.01.2022 You never know what another person is experiencing in their lives, no matter how they look to you at any given time. People with chronic illnesses are very good at masking their pain. They do it to get on with their lives, they do it to distract them from what they are actually going through, they do it to protect their loved ones, they do it to put on a brave face for the world... Please treat everyone with kindness and empathy. They may be smiling on the outside but be scre...aming with pain on the inside. #CRPS #CRPS2020 #CRPSstrong #CRPSwarrior #ComplexRegionalPainSyndrome #GETLOUDaboutCRPS #CRPSawarenessMatters #Strong #CRPSbrave #CRPScapable #CRPScharity #CRPSaustralia #StrongerTogether #CommunityFirst #BeKindAlways #CRPSreallyGetsOnMyNerves #CRPSnetworkAus #YourCRPSna