#rsdsa

[leaderintitleonly]

Hi. Friendly reminder. I have this:

Complex Regional Pain Syndrome And here are some resources if you're having trouble understanding what I'm going through.

RSDSA Mayo Clinic National Institute of Neurological Disorders and Stroke Stanford Medicine

We don't know if I have type 1 or type 2. We're pretty sure I have type 2 (causalgia). It's still CRPS. I take ketamine infusions. You may have heard how that helps people The pain is worse than getting a limb sawed off without medication. That's what I'm going through right now. I need you to understand this. I am struggling to do my daily chores and I am also unable to do things like take care of myself. I am trying my best all while my mental health is in the garbage. Please be kind. I'm aware I'm 3+ years behind on things but the person behind this and my associated accounts is fighting with a condition that won't ever go away and will ultimately be part of what ends me. If I move too slow for you and you're not cool with me doing short hand, I'm not mad if you unfollow. You just have to understand I am really, really struggling in my life and I have to put myself first before I get online. And sadly that sometimes means I don't log in for a while because I am really sick and in bed after doing things as simple as brushing my teeth. You're fine. Just please reevaluate if I am the rper for you.

[healthcare-updates]

Expert Insights: RARE DISEASE DIAGNOSTICS

Author: James Doulgeris, Chairman, Population Health, Advisory Board, RSDSA

Rare diseases cost society an estimated one trillion Euros in Europe and one trillion US dollars in the USA. With over 10,000 rare diseases, there is no practical way to educate doctors on how to identify, diagnose, and treat them. Until now. This article outlines the solution including the pathway to more effective treatments and potential cures.

Click here for Online Version: RARE DISEASE DIAGNOSTICS

Click here for Digital Magazine: RARE DISEASE DIAGNOSTICS

[whiskeyfellow]

30 Days of Bourbon Challenge, Day 1

Welcome to the first day of the 10th Annual 30 Days of Bourbon Challenge! I’m starting with a killer Bourbon that’s hitting store shelves about now: J. Mattingly 1845 Classic Bourbon, and I’m raising money for RSDSA to help cure CRPS. Cheers! 

To help, please visit -à RSDS.org/donate

[raseforcrps]

#rsdsa @rsdsa_official #rsdcrps #crps #crpshope https://www.instagram.com/p/BwFvM-ng9rh/?utm_source=ig_tumblr_share&igshid=1krv620ij4azt

[ahkswiftie200721]

Wearing my shirt to support everyone with rare diseases including myself 💕 . . . #showyourstripes #rarediseaseday #rsdcrps #rsdcrpswarrior #burningnights #rsdsa #crps #keeppushing #faithhopelove #everydayisachallenge #keepgoing #crpswarrior #reflexsympatheticdystrophy #complexregionalpainsyndrome #chronicpainwarrior https://www.instagram.com/p/Bub-f6aAvXy/?utm_source=ig_tumblr_share&igshid=1e2g2juheyk4j

[amplified-pain-culture-is]

About this blog

- Submission-based blog

- Please start submissions with "[AMPS/CRPS/RSD/amplified pain/etc] culture is..."

- Mod is an adult and uses they/them pronouns

- As much as I'd love to answer questions and you are free to send some, amplified pain syndromes are confusing conditions with conflicting information out about them, so I may not always be able to answer it.

- That being said, I am not a doctor. I cannot give out medical advice.

Inspired by blogs such as @chronic-illness-culture-is

More information about AMPS/CRPS under the cut

What is AMPS/CRPS?

Amplified Musculoskeletal Pain Syndrome (AMPS) and Complex Regional Pain Syndrome (CRPS) are also known as juvenile fibromyalgia, Reflex Sympathetic Dystrophy (RSD), or causalgia. They're chronic conditions that, though not always synonymous with each other, fall under the same category of amplified pain syndromes. They're also rare (with under 200,000 cases currently known) and frequently misdiagnosed and misunderstood.

AMPS and CRPS both cause extreme muskuloskeletal pain as well as a heightened sense of pain. Though its existence has been documented back to the 1850s in America, its been labeled as "hysteria" by some because of the lack of understanding, and has been labeled the "suicide disease" by nonprofit Ferocious Fighters.

Resources for AMPS/CRPS patients:

Ferocious Fighters - non-profit for patients ages 0-21. They provide resources, care packages, support groups, as well as a list of more organizations here

RSDSA - non-profit for all ages, funding research into CRPS/RSD. This website also provides tons of literature and papers you can read up on or give to your doctors as an AMPS/CRPS patient. Theres also more resources here

An overview on AMPS

[fnd-pain]

https://rsds.org/?fbclid=IwAR1SeDb0QGFCXfpjNZKw3a4hHgYwa_yQ8Wq_Yf8qYms_sllUyieUWcOUc2k

[painexam]

The Reflex Sympathetic Dystrophy Association

                www.RSDS.org

  On this Episode Dr.  Rosenblum:

·         Interviews Jim Broatch, Executive VP and Director: jwbroatch@rsds.org and Beth Seickel bseickel45@gmail.com of the RSDSA

·         Discuss how the Reflex Sympathetic Dystrophy Syndrome Association is making a difference in the lives of Patients and Families affected by CRPS

·         NonProfit activities that the RSDSA has developed

·         Clinician Education and more!

RSDSA Courses Below

https://rsds.org/accredited-course-on-crps-for-mds-and-rns/https://rsds.org/accredited-course-on-crps-for-mds-and-rns/

  https://rsds.org/rsdsa-pediatric-crps-accredited-online-course/

w

Log in and enter RSDSA as your cause!

They will make a donation to RSDSA!  Thank you for your support.

  http://rsds.org/donate/

Other links which may be helpful

  http://rsds.org/youve-been-diagnosed-with-crpsrsd-now-what/

  http://rsds.org/joinmembership/

https://rsds.org/how-to-obtain-the-best-medical-care-for-crps/

https://rsds.org/understanding-crps-pain/

https://rsds.org/how-crps-is-diagnosed/

Check out this episode!

[amplified-pain-culture-is]

If you have amps/crps, I highly recommend doing this as well for ANY ER visit, doctor's visit, anything. RSDSA has pamphlets and print outs for patients to take with them.

Hopefully this tip can really help someone, please take this advice or suggest to friends and family if you feel it could really assist them

[webauntie]

Q8: It’s The #SpoonieChat Wrap Up!

Tell us something that we should know.

@DawnMGibson founded the The Original #SpoonieChat back in the mists of time, when giant sloths rode unicorns over the tundra. Okay, so it was actually 2013, but that was awhile ago. She can be found hosting it most Wednesdays from 8-9:00 PM ET, on Twitter.

Spoonie Chat is a community for people living with chronic illness and disability. It’s also Dawn’s primary public advocacy platform.

Q: Who is Dawn?

Click HERE to find out who this Dawn person is and why you should pay attention to what she says about health, disability, and culture.

Q: What were we talking about again?

Complex Regional Pain Syndrome

Disclosure: I’m pleased that #SpoonieChat is able to join The Reflex Sympathetic Dystrophy Syndrome Association (RSDSA)’s Rare Disease Week efforts. They’ve agreed to sponsor chat in exchange for my help raising awareness of their community. I’ve curated all the chat questions and overall tone of our event. They’ve provided me with 5 links to share during our time together. Click here to visit their website.

Q: Where are the current #SpoonieChat questions?

A: Click HERE to go back to this week’s post.

A few months ago: That time Dawn & Alex were on Alice Wong’s podcast!

Here’s a link to the questions.

Here’s a link to the podcast audio.

Here’s a link to the transcript.

Q: What’s Spoonie Chat?

A: Spoonie Chat is several things at one time.

1. #SpoonieChat is a Twitter hashtag founded by @DawnMGibson, meant to draw together folx with chronic illness, invisible disabilities, and other differences that shape their lives in profound ways.

People all over the world use this tag to ask questions, share their experiences, and to offer and seek friendship and solidarity. Some users don’t know anything about Dawn or the community, but see that the tag is there for them.

2. Spoonie Chat is also a weekly health & disability themed Twitter Q&A event hosted by Dawn or her designate.

3. Spoonie Chat is also Dawn’s primary public advocacy platform and community organizing space for people living with disability and chronic illness.

[aslsuzyq]

There’s going to be another pizza party in Westland Michigan tomorrow November 30/Thursday! It will be at Mario’s pizzeria in Westland, MI 48185. The address and phone number on the photo. Please feel free to ask me any questions. The proceeds of 20% from all the sales from the evening from 5:00 PM through 8:30 PM = 20% will go to RSDSA for RSD/ CRPS awareness month. We will go out with a bang! Please SHARE EVERYWHERE!!🎗🎗🎗🎗🎗❤️🎗🎗#RSDSA #CRPSsupport #rsdsupport #RSDSAfundraser @rsdsa_official #RSDCRPS #crpsfightingback #crpsawareness17 ****There’s going to be another pizza party in Westland Michigan tomorrow November 30/Thursday! It will be at Mario’s pizzeria in Westland, MI 48185. The address and phone number on the photo. Please feel free to ask me any questions. The proceeds of 20% from all the sales from the evening from 5:00 PM through 8:30 PM = 20% will go to RSDSA for RSD/ CRPS awareness month. We will go out with a bang! Please SHARE EVERYWHERE!!🎗🎗🎗🎗🎗❤️🎗🎗

[cbdessentials4life]

Cannabis vs. Pain: Strategies to Combat CRPS with Mara Gordon - RSDSA

Cannabis vs. Pain: Strategies to Combat CRPS with Mara Gordon - RSDSA - https://cbdessentials4life.com/index.php/2020/12/01/cannabis-vs-pain-strategies-to-combat-crps-with-mara-gordon-rsdsa/

[raseforcrps]

#RSDSA #rsd #crpsawareness #medicalert #crpshope https://www.instagram.com/p/Bvo0bBLn2S1/?utm_source=ig_tumblr_share&igshid=sq84i830xakd

[longislandweekly-blog]

Last year’s walk attracted more than 500 people and raised more than $65,000 for RSDSA, which supports people everywhere living with CRPS.

The Reflex Sympathetic Dystrophy Syndrome Association (RSDSA) has announced that Saturday, Sept. 7 will be the date of the 4th Annual Long Island Awareness Walk and Expo for Complex Regional Pain Syndrome (CRPS). More than 500 people suffering with the most extreme chronic pain known to man are expected to gather at Eisenhower Park, East Meadow, for the event that is designed to be a community educational day as well as a fundraiser.

RSDSA supports people and caregivers diagnosed with CRPS (aka RSD), a debilitating and chronic disorder that afflicts more than 2,000 Long Islanders with unrelenting neurologic pain that trumps the pain of cancer, amputation and childbirth. Online registration for this year’s Walk and Expo is ongoing now through Aug. 15. After that date, participants may register the day of the event at Eisenhower Park.

The goal of RSDSA’ s annual Long Island Walk and Expo is to raise awareness, fund better treatments, and ultimately find a cure for this disabling neuro-inflammatory disorder that can happen to anyone following a trauma of any kind. The 2019 RSDSA event on Long Island is designed to give patients, caregivers, medical experts, therapists and businesses the opportunity to network in an informal, supportive environment. 

This year’s Walk and Expo will take place from 8 a.m. until 2 p.m. at Eisenhower Park’s 1K and 2.5K paths reserved for the event. In addition to almost 500 walkers last year, the 2018 event attracted more than 50 volunteers and more than doubled the money raised from the inaugural walk on Long Island in 2016.  

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“Since its inception on Long Island three years ago by three female patients who suffer with severe CRPS, RSDSA’s awareness walks on Long Island have raised more than $150,000 for the organization,” said Jim Broatch, RSDSA’s executive vice president and director. “Our Long Island Walk and Expo has attracted more than 1,500 attendees to date from throughout the metro New York region, as well as other states far and wide. It has become one of RSDSA’s most successful fundraisers, and is so important to us because our organization relies on these programs for emergency patient services, research, education, advocacy and more. The event is much more than a walk. Our hope is to expand the CRPS community by creating awareness of the disorder, offering support, providing education, creating networking opportunities and raising much needed funds. 

CRPS plagues some 200,000 people nationwide; however, it is often under-reported and misdiagnosed. According to one report, only 4 percent of medical schools offer dedicated courses on pain, which leaves today’s providers without all of the skills required to detect, treat and manage CRPS. This further contributes to improper treatment for those diagnosed with CRPS and often leads to overall failure in care and treatment. 

Registered participants may choose to walk, run, roll or simply just attend this year’s RSDSA event. Anyone can attend regardless of ability. Walk admission for 2019 will cost $25 for adults (ages 12+); $10 for children ages 6-11; and free for children under 5. A free T-shirt will be distributed to pre-registered participants. Day-of admission is also available at the park for $30 for adults and $10 for children. 

Educational resources, sponsors and health professionals will be on hand during the walk, along with entertainment and craft activities for children. Admission includes a complimentary bagel breakfast. The walk will be followed by a barbecue lunch to encourage socializing with other CRPS patients, care givers, sponsors and medical professionals.  Raffle prizes will help generate additional funds for RSDSA.

For more information about the Sept. 7 RSDSA Long Island Awareness Walk Event, visit: www.firstgiving.com/event/rsds/4th-LI-CRPS-Walk.

Formed in 1984, Reflex Sympathetic Dystrophy Syndrome Association (RSDSA) is an international 501(c)(3) not-for-profit organization based in Milford, CT. Its mission is to provide support, education and hope to all affected by the pain and disability of CRPS, while driving research to better develop treatments and a cure. RSDSA, which sponsors similar walks and fundraisers in other cities across the US, aims to improve the lives of those affected by Complex Regional Pain Syndrome/Reflex Sympathetic Dystrophy. 

For more information about RSDSA, visit rsds.org, call 877-662-7737, or email RsdsaLongIsland@gmail.com.

Complex Regional Pain Association hosts its 4th Annual Long Island Walk on September 7 at Eisenhower Park. Register today to participate in the event that supports people with the debilitating pain disorder. The Reflex Sympathetic Dystrophy Syndrome Association (RSDSA) has announced that Saturday, Sept. 7 will be the date of the 4th Annual Long Island Awareness Walk and Expo for Complex Regional Pain Syndrome (CRPS).

[xoner8ed]

#Repost @rsdsa_official (@get_repost) ・・・ A day late from us, but we encourage you to head over to @raseforcrps to see the daily facts about RSDSA and #CRPS #RSD Some of the graphic elements are things we can’t repost but they are just gorgeous. There is a post daily so please check them out! #ThisIsCRPS #crpsawareness17

[jewelrymkr]

We each feel like our own pain is the worst and that what we are going thru is the hardest and most devastating. In a way, this is partially true. That is because when it is “YOUR pain” then it IS “YOUR” WORST.  What I mean is that everything can be challenging when you feel like your own story is the only one that’s difficult like this. Consider Brian Greene’s idea, as he writes about the string theory in clear English : He points out that, “in an infinite universe, each of us is at the center”. Exactly, my point and what I’m trying to convey here, today. For example, one person may feel that whatever they are going through with chronic pain is the worst pain they’ve experienced in life…ever!, The patient may feel this way due to the possible negative outcome of certain treatments or the lack of treatment and/or empathy, or understanding. One person could feel that their situation is the very bottom of the “pit”. The true “fires of Hell” very well may be his/her situation. The outcome could be a “loss” of the use of his legs; to him this is the worst thing that he could imagine. For another pain patient, or an RSD/CRPS sufferer, she may be afraid and feel that her suffering is the hardest that anyone can imagine because RSD/CRPS is #43, which is so very high on the McGill pain scale. She may scared because she is so young and has her whole life ahead. For her, this disease is taking so much; it is a thief of sorts! She could lose so many possibilities in life.  Maybe she has indeed lost so much already? What about the younger ones who’ve never been able to experience true love or the dream of being a mother and holding that baby for the first time? Maybe the dream is something different but what if they don’t ever get to do the things that I got to do prior to my pain? There is much to lose at each and every stage, when your life gets harder, the pain gets worse.  It even gets more difficult to find things that make you smile again.

Today it feels to me as though life for patients with chronic pain has become much more challenging. We have to worry about going to different specialists and having a legitimate “Pain Dr.” now instead of just going to our General Practitioners or Primary Care Docs. We must have and visit a Pain Dr. every month or 2 months, if we are on any kind of Opioids. Today we must do urine tests, the million questions (yes, I’m exaggerating), the signature or the signing of a contract to prove that we will not seek out any other Dr. or even get any other medications for pain from any of our other Physicians. Therefore, if we have a surgery, our pain meds must be authorized by our current Pain Physician, before we can get them or take them! The new “CMS strategy for use/misuse of Opioids” is happening as I write this article . Let me explain.  This is the Centers for Medicare and Medicaid Services. They intend to curb opioid misuse and abuse. But in the meantime they could cause needless suffering to many of our most impoverished and elderly persons in pain. There were posts made by me and Letters sent out by the U.S. Pain Foundation & RSDSA, regarding this. There were tweets, posts, letters etc. going around to get emails out by Friday, March 4, 2017;  to help change some of this strategy before the deadline at midnight Friday. The new Strategy doesn’t go into effect until April 7th, 2017, but we needed many emails to go out.  We needed these emails to help fix what may be a problem for many chronic pain sufferers who rely on Opioids for pain relief.  (*For more information visit: The U.S. Pain eNewsletter, Feb 1, 2017 “CMS publishes new strategy to combat opioid misuse”)!  There are obstacles coming toward us from all directions it seems right now. There’s also the way that Pharmacists can be “the Dr.’s” now and they, along with our insurance companies, can override what our own physicians direct us to take for pain medications. Things are changing and getting more difficult for many persons living with high pain illnesses. I have had people come to me in the groups that I administrate. They have asked me “What can I do? The pharmacy wants me to come back every 5 days to get Opioid pain meds that I’ve been on for years? I cannot drive and it’s an hour away from my house! What can I do?” I feel terrible because I can’t “fix” it for them. I’m writing letters, tweeting & emailing, but no one is listening to me either; not yet. I don’t mind if they change the way the medications are made, such as changing it so they cannot be crushed, broken or changed in any way into another form.  That’s fine with me because I am a legitimate pain patient, who takes my pain medication responsibly at the right times and on the correct dates. But God forbid if you do anything different or wrong! I was questioned because my pharmacy took 6 days to get my medication in!  My Dr. wanted to know why “I waited 6 days to get my pain medication”. I felt like a criminal or like a scared child! This was no fault of my own and in fact, my husband tried to check around but nobody else had my medication in during those dates either. I was punished because I’m the one who started getting very ill for those 5 days! I had to go through that because even though I go to the same pharmacy monthly and for the same medications; they didn’t have my specific  medications that month! When I returned to the Pain Dr. appointment, of course he wanted to know why there was a “lag” in time for picking up my meds. It’s just getting harder, more scary and more confusing. I’m tired and I can see why people feel like giving up sometimes. But we cannot give up! I will not ever give up!  I have to keep on fighting for my rights and for all of our rights!

After my heart surgery in February, 2013; I found out that my RSD/CRPS had traveled to my heart as well as my whole left side. I have so much pain in my neck, knees, lower back, hands, feet, arms, legs etc, from several of chronic pain illnesses or issues. At times, I’m afraid, sad and I get lonely too. But I know that this is only “MY” worst, not anyone elses. I only truly know my own private pain. We all have our own health and pain issues that are specific to each of us. While I can’t take the pain “journey” for you, I can go through it “with” you in a personal way. I can be your friend, listen to your heart and because of computers, I can virtually reach out to you via my groups, my blog and even articles.

Every one of us has real fears, anxieties and true pain.  I recently read a story about a poor woman in terrible pain with great fear. I do understood her fear (to a point) and her pain (only from as far as I can draw from my own experiences). Then I read about another, younger woman in the same kind of horrible pain. In both of their personal stories, deep fears and pain came through. The younger woman feels that she has so much to lose, as she hasn’t even started her life yet. Some of us have already had our children and we’ve had “real” jobs or a career for a while. We may have even been through some good &/ or exciting adventures prior to becoming chronically ill? Maybe we’ve done some fun things in our lives or accomplished a goal? Some of the younger people living wth chronic pain have not been able to achieve any of those things, not yet, anyway. What I see through my patient advocacy work with chronic pain and Invisible Illness; is so much love and compassion. Sometimes it is dampened and even overidden by our real fears and the feeling that we are “the person worse off”. We each may feel that “it’s not fair”  or that our pain is “the worst”.  But it is our own personal worst; which is different for every individual. When I think of pain in this way, I realize that we all have essentially the same inner feelings. If I can stop thinking of my own situation and my pain, and step back for a moment; I’m better able to  empathize with others who live with pain. I know that many of us share the same inner feelings of solitude with our illnesses at times.  We  cannot give up on ourselves or each other. We must not stop trying to fight for a life that we each deserve.

Yes, this is what Chronic Pain does.

No Competition, No Winners! We each feel like our own pain is the worst and that what we are going thru is the hardest and most devastating.