Cause of Complex Regional Pain Syndrome Further Examined.
“The researchers reported recent discoveries indicated there is an “autoimmune contribution,” to the condition, which often occurs after a small accident or surgery and causes pain that persists for several years.”
By Jacquelyn Gray | August 05, 2014
Click above for full article
(Pressed Post)
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I shared a similar article a bit ago to my Facebook and related pages. This one is 2 days old. It is a reminder that there is hope! ~T
I first began to advocate in 1985. I’ve told the story before at least in part. I was 15. I started college later that year. Majoring in Criminal Law, a minor in Drama/Professional Acting. It should have been the other way around, yet the likelihood of a career in one profession over the other made that choice for me.
By 1990, I was on my way to the big time. My husband sent me! I had graduated from professional acting and modeling school, I had an agent, I was really good! The modeling wasn’t what I wished for but it did give me the presence and poise to walk with style and later in life would become a success in another way. I had only began to bloom in high school, the shy one who knew all her lines, all of them. Just couldn’t do a thing with it. Learned method acting, learned to emote, learned it all and I left them speechless at my audition at JRP.
Two things happened that same year. I lost my twins inside me and I closed my dads eyes. The commitment to advocacy, the Social Security Administration, the Appeals I wrote, the diapers I changed, the administration’s I fought with, while the man lay dying in the living room of our home. We won! I won! My Daddy received his first check within a week after his death. Yep! From the onset of his inoperable stage 4 lung cancer to the date of his death was 5 weeks. I was 22. I had 2 little girls. I had been married 5 years. I had the hospital in Chico, CA send him home to me by ambulance. He would die with me!
Compassionate Choices, I fought for years. I believed that California should have the same law that Oregon had. Enough of that!
My young nephew has Parkinson’s Disease. He was only a teen when diagnosed. He is only in his 20’s now.
The CRPS/RSD Community means so much to me and has for so many years, but my wings have never been to be clipped. Lock a collar around it to show who I belong to, Tat brand it to show what I am, proud! Shaking those slave bells around my ankle is the all time reminder that freedom exists when you are with the one who truly owns you.
So here’s the deal, some of you know from way back when and some of you know I let it out from time to time. No secrets.
I can accept you in all of you as long as it’s not hurting me or mine. I can go as far as to say I love you, care for you, * am grateful for all your hard work, all that you’ve accomplished, just.. just, everything.
You may notice or you may not notice, but I really do not care about most of it. All I really care about is that people aren’t being hurt and that the community is being cared for.
I don’t see all the happenings, I don’t see all the posts, I will never be able to keep up on any daily going on’s. I even miss the good things. Things that people would never want to miss. Yes, I miss them, too!
I will tell you that I must be a hypocrite. And I doubt anyone else will admit they are too. I know you are!
There’s no face to faces online. There is no option to put us all face to face in a discrepancy and lay it all on the line with all involved parties. Get it over and done with!
Since I may not have the option to have that face to face, if I can’t have it in a conference where my part is laid out too? Then there is something wrong.
And until I can, my trust radars are extremely low.
Wouldn’t yours be?
You all probably already know this but..
Keep in mind one thing, if you have a secret, or even something you’ve shared with someone and hope no one else will know?
Expect for most everyone to find out!
Such is life!
Just know one thing, I have kept more secrets that you will ever imagine And I’ve kept more conversations whether they be secrets or not.
Aside from one person, and I’m trying to resolve it. Don’t worry it was more about me than it ever was about you.
I really do forgive!
All I want is for us all to be good to one another.
The one thing that Modeling (walking) gave me, assisted me with, which is partly funny and partly amazing is, partway through my injury, a man stopped me while I was limping and told me I had an incredible walk. Really? I was dumbfounded. I do have a little sway to my walk. Incredible? Not hardly, but wow at the compliment! I use my left leg to pull my right leg and I have learned my own technique in a sense. So.. yeah my walk is me!
All we can ever do as individuals is be who we are. Build on it and who we hope to be. Be happy for ourselves and the person next to us. Shake those pom poms and praise the skies that if it isn’t ourselves it’s someone else to do it for us in the name of the same causes(s).
My son is a volunteer/advocate for Project Ride INC.. (and others) and I’m right there with him sharing those links, caring, advocating.. and it’s not CRPS/RSD.
My Communities are diverse, but my heart …
Let me leave you all with this..
“We have all been united by a single common denominator…
…And that is PAIN” ~©1997-2014 Twinkle VanFleet
Megan 15, Tori 15, and Gracie 11.
Help These Girls Get the RSD/CRPS Treatment they need!
Megan Manuel (15)
http://www.gofundme.com/2f7l8g
Megan needs a Spinal Cord Stimulator
Tori Quinton (15)
http://www.gofundme.com/Help-Tori-get-better
Tori needs Calmare Therapy
Gracie (11)
http://www.gofundme.com/8wjinw
Gracie need to get to Dallas for CRPS Treatment
2 of the girls are 15 years old with RSD, one is only 11 with RSD.
Please consider helping them reach their fundraising goals or by sharing their pages so that they might have an extra opportunity for better exposure. The girls will be featured by the Power of Pain Foundation’s Patient Fundraiser Program August 2014.
As a CRPS/RSD patient myself, I would like to help their pages get noticed too, get the care they need, even if in this small way, so that they might have a better quality of life moving into their adult and teen years. They are each at a precious ages with school functions to look forward to, dances, activities to enjoy. Without pain relief this will not be as possible as most take for granted. As adults it is hard enough, most of us have gone through life lessons to teach us strategies for survival. Adults can barely manage. I believe young ones have it much harder. They need life experiences, good memories to build on.
Their adult world comes soon enough.
Each parent will choose their child’s options, they may even decide on something else along the way…
Any recognition for Megan, Tori and Gracie is much appreciated.
Thank you!
My day time stop breathing episodes have been worsening. It’s still and silent! Where ever I am in the breath at the time is where it all stops. If I had just inhaled I have a few seconds as if I’m under water, I’m not panicking yet. If I had just exhaled there’s little time left. I don’t gasp for air, my body doesn’t startle or flex, everything ceases. At some point in my mind I am aware that I’m not breathing this is when the panic sets in, I tell myself breathe, but I’m not breathing yet, breathe! I can’t even hear my heart beating.
And then I come back! My chest is thumping loudly, my head is pounding, my body is shaking, but I’m back.
I thought these were panic attacks in the past until I realized if they were I should probably be attempting to get air, take it into my lungs. My body and mind doesn’t react this way, though. I have a Pulmonary Specialist that I see for Central Sleep Apnea and Narcolepsy. I do know that I stop breathing numerous times a night for up to 2 minutes. I use an Auto Servo Ventilator for that.
When I was a child I nearly drowned trying to save my sister who was drowning. Her instinct was to save herself so I went under longer. I know what it feels like to not have that air and having it occur more and more often is frightening.
I’ve been lucky through out my life to not experience many headaches. Just average really with the flu, cold or just a random one. The headaches I’ve been having have been terrible. My chest, my jaw, face, arms. All of me, I suppose. Beyond what I consider my normal CRPS. My blood pressure has been on the rise. I’ve been on Lisinopril for it for over 2 years, but it’s still high in the 150’s and 160/’s.
One minute you’re doing something, even resting and the next your gone! The clock is still ticking, but time has stopped for you. You can’t make it move.
No one else can make it move either…
That’s fear!
We should not stop living because it hurts! I’ve heard so many times if so and so has Complex Regional Pain Syndrome/Reflex Sympathetic Dystrophy or Chronic Pain in general if they go out for the evening, wear a certain type of clothing, shoes, accessories, move their bodies they can’t possibly hurt that bad. Wrong! It means they are not letting the pain and disability rule their lives. They want to live, laugh, enjoy a moment, make new memories, perhaps experience some of the old.
Too often we become trapped in the cycle of isolating ourselves. Maybe even feeling sorry for ourselves. It’s okay to feel that way from time to time it’s not okay to let the illness take over our lives and that which we love. Family, children, goals, dreams and wishes for ourselves.
If you see someone doing something you wouldn’t do or your body isn’t capable of doing please don’t judge them. Maybe all it means is that they are pushing past the pain for a few minutes, a few hours, or a few days. Granted there are people in the world that like to be sick, they crave attention and pity, but not all Chronic Pain Survivors have this mentality. It is not fair to group them into one category. One size does not fit all and it never will.
Some of us use medication to try to survive, other’s have gone off of all medication and use alternative strategies for coping and managing pain, other’s use a combination of both as I do. Just because someone can survive without medication doesn’t mean they feel better than you do it only means they have learned to manage their pain a different way.
If you love to dance as I did, dance! I do! I may last 20 seconds, I might make it through a half of a song, I already know my body is going to pay for it, so why should I hold back because I might end up down for a week after? I shouldn’t and you shouldn’t either! If you love to garden, do it! Pace your activities so you can enjoy your time. If after a half hour you can’t do anymore, don’t. There is a fine line between doing too little and doing too much! Learn you and what you are able to achieve. It doesn’t matter that the next person only lasted 5 minutes or another person lasted an hour. You are you!
Make daily goals. Lists can be helpful. I often have 5 things on my list, my goal is to be able to mark off 3 of them. If I can mark off all 5 it’s just a plus for me and if I only make it to 2 I’ve learned to let myself know it’s okay. Don’t put yourself down for not completing a task just move the one you missed to the top of the list and start again.
I tell myself “I will” instead of “I’ll try” it’s just something I’ve found quite useful after completing my Functional Restoration Program back in 2009. The word “Try” sets me up for possible failure from the moment I say it to myself. “I will” motivates me! There is no pass or fail here. We can or we can’t. We will or we won’t. We are not only individuals but individuals in our own pain, depression and mindset also.
Many of us deal with depression and/or anxiety secondary to our chronic pain. Close your eyes, relax and go to your happy place. Using imagery can be helpful. Don’t forget to laugh and laugh with others. Laughter produces endorphin’s and endorphin’s decrease physical pain.
Physical pain and depression can be a vicious cycle in itself. Depression causes pain to increase and the pain causes the depression to worsen. Living, smiling, loving, practicing appreciation and gratitude goes a long way in helping us overcome and survive the diagnosis’ we’ve been handed.
While there are times I suffer, I know we all do, I do not consider myself a sufferer, but instead a survivor. I am surviving this! I am alive! It’s been said that pain is that one reminder that we truly exist and for me I believe it. I am reminded every moment of the day that I am living, I am alive.
Be good to yourselves!
Don’t stop living because it hurts, survive the pain and go on.
~Twinkle VanFleet
I learned at least a year ago that a blood test would soon be available from a reliable source. The following article is interesting. If the test is found to be reliable and accurate many current patients may learn their situation was a misdiagnosis. This could be said also for those with RSD/CRPS when we start to undergo the same type testing.
I’m wondering how it will all play out in the end for the patients and the physicians.
~Twinkle V.
FAQ: Reflex Sympathetic Dystrophy | The Dr. Oz Show.
Philip Getson, D.O. • Yesterday (July 25, 2013) “I was given the honor of having a post on RSD featured on droz.com Please feel free to comment on it”
“I am delighted to get the disease the exposure it so deserves”. “Here is the link for the RSD post” These above are the personal words of Dr. Getson, I have quoted.
http://www.doctoroz.com/videos/faq-reflex-sympathetic-dystrophy
I am delighted that Q & A’s regarding CRPS/RSD (Complex Regional Pain Syndrome/Reflex Sympathetic Dystrophy) made it back to Dr. Oz. via Dr. Getson.
In addition, the differences between CRPS/RSD and Fibromyalgia were touched on.
Paula Abdul tried to do her part in sharing the debilitating outcome this illness causes, but as some of us know television editing can leave a lot out.
Even so I think Paula made her point. There were some people that tried to convince me of how terrible she did, I re watched that segment I can’t tell you how many times and the bottom line is she did great! How much can you do in so little time. It wasn’t an RSD specific show in the first place it was to showcase a vitamin line of healthier living. So yep, good job for what she had to work with.
For Dr. Philip Getson who has been educating and treating CRPS/RSD for decades, I am honored to have spoken to him briefly via email and look forward to again. I also look forward to the P.A.I.N. SUMMIT hosted by the Power of Pain Foundation during Pain Awareness month where he will be Guest Lecturing. I would love to meet him in person and attend the conference in Arizona but if not, I will still be attending via UStream and have already registered.
~Twinkle V.
People Striving to Make a Difference in the Lives of Those Suffering and Surviving CRPS/RSD.
Hi everyone!
I’m seeking Photos for a future video that will feature those of you who strive to make a difference in the lives of those with Complex Regional Pain Syndrome/Reflex Sympathetic Dystrophy.
Once all photos are in it will be fairly decided who will be featured in the video. Space will be shared with other’s who work just as hard yet has either never been or has rarely been recognized for their efforts. September is Pain Awareness Month and if all goes well this video will debut during that month.
Your photo can either be a head shot or a body shot. Send up to 2 photos, if you like!
Along with your photo, in the email body, please include:
1. Name, Foundation, Organization, Website Name, Blog Name, Radio Station, Etc. (You can also list all of the above)
2. City and State. (Or Province/ Country) (This video is not limited to the United States)
3. A brief bio on what you do (or have done) to make a difference in the lives of those suffering to survive CRPS/RSD. If the bio is too long it may be edited for space.
If you are a Mother or Father taking care of your CRPS/RSD diagnosed child, you are making a difference in the life of someone. If you are a child (adult or minor) of someone with CRPS/RSD and you are caring for your parent, you are making a difference, too.
In your email please add that you are giving me permission to use your photo and info. (I, (your name/organization), hereby give my permission to Twinkle VanFleet and RSD(S)-CRPS Advisory to use my photo and enclosed information for the Video Slide Show Presentation People Striving to Make a Difference in the Lives of Those Suffering to Survive CRPS/RSD that will be made public via YouTube.
I have personally invited a few people to be featured. If you do not get a personal invite from me this does not at all mean that I would not love to feature you. Please don’t feel shy or as if you aren’t good enough or haven’t done enough. You are just as important! This will be an annual project! No one will know from me if I’ve contacted you or if you sent on your own. That will be your business to disclose or not! ~smiles
Deadline– August 15, 2013. If you need a few day extension due to pain, please let me know before the deadline.
Please send to: submissions@crpsadvisory.com
If you have any questions, don’t hesitate to ask. 🙂
Thank you!
~Twinkle VanFleet
Independent RSD/CRPS Patient Advocate, Spokesperson, and Educator.
California Ambassador at the Power of Pain Foundation
The following information has been taken from notes as a listener to the show and research, nearly all the words themselves belong to Dr. Victor M. Pedro. I take no credit for these. My goal is to get this non invasive seemingly promising information out so that other’s may find it a hopeful treatment program in their journey with CRPS/RSD, Chronic Pain, TBI’s and other illnesses and conditions.
Yesterday on the Living with Hope Radio show with Featured Host Trudy Thomas and Co Host Barby Ingle . Dr. Victor M. Pedro discussed Cortical Integrative Therapy (CIT®) a technique he uses and developed.
The entire show can be listened to here: http://www.blogtalkradio.com/thebodymindandspiritnetwork/2013/05/29/living-with-hope-with-host-trudy-thomas The Living with HOPE Show is Sponsored by the Power of Pain Foundation.
Dr. Victor M. Pedro’s career began as a Chiropractor and continued on with a Post Graduate in Functional Neurology. He says ” it was a very good starting point for brain function and innovative treatments that could begin to make a difference in peoples lives. He was fortunate enough to receive grant funding from the Rhode Island Legislature which permitted him to do a variety of studies and to study with significant people to get a more in depth and cutting edge picture of what was available in Neurology and how the brain functioned.
Trudy asked ” Does this therapy work for other conditions other than RSD? Dr. Pedro stated Yes! What he wanted his contribution to be is the person credited with creating an algorithm for understanding where in the nervous system to intervene.”
There are plenty of resources that will explain what a brain dysfunction is or pathology is, disease process or diagnostic procedure to figure out what folks are complaining about.
The rehabilitative model is where the challenge for the future lies.
Barby ask’s “Does every patient have a different algorithm? Or do you find they are similar with the same condition? The doctors answer’s ” By algorithm I mean a process we go about to evaluate what the affliction is or what’s wrong with the patient.”
Reflex Sympathetic Dystrophy or Dysautonomias in general are a condition Dr. Pedro has a particular interest in. With this condition he tries to find out how the autonomic system is dis-regulated or not working well and then his team tries to decipher in the patients does this person have Reflex Sympathetic Dystrophy (RSD) because the Sympathetic Nervous System is too high and not being inhibited or is it the Parasympathetic System that’s undergone demise and not effective.
“The treatment is actually different and makes all the difference in the world to the patients outcome, Dr. Pedro say’s.”
Barby ask’s ” Similar to Traumatic Brain Injuries (TBI’s) Would there be a different protocol for that?
Dr. Pedro answer’s “A different protocol in terms of how we’re going to add on different diagnostic pieces to the evaluation. Then we begin to identify precisely which modalities the patient needs. A TBI patient may have a similar pathology of an RSD/CRPS patient, may have similar findings, however we may go about the treatment process slightly differently.”
One of Dr. Pedro’s patients and a good friend of Barby Ingle’s just did an interview which will be released in this Saturday’s (June 1, 2013) edition of Pain Pathway’s Magazine. Please look for it!
Physical, emotional and nutritional needs are also taught this during treatment.
The autonomic nervous system delivers fuel to the body and brain. The autonomic nervous system is the automatic part of the nervous system that controls your heart rate, size of arteries delivering blood or fuel to the body and into our brain itself. This part of the body can be evaluated through a series of tests.
Someone with a compromise in their sympathetic nervous system may not have as much profusion as should be present. The long term consequences are considered regarding how this is effecting the tissue and that’s why the trophic changes present in this pathology.
Barby ask’s “Is maintenance treatment required or is this a one time process?”
Dr. Pedro states “The evaluation process takes 2 to 4 hours depending on the patient.” Based not only on tests, but the patients ability to participate.”
At the end of the evaluation we attempt to draw for them what we believe is wrong in the nervous system and make an educated hypothesis as to where the dysfunction is and what can potentially be done to correct it. A series of windows of observation, sympathetic, autonomic windows of observation more appropriately. We identify these at the end of the initial observation and we give the patient a treatment to see if their pain level comes down significantly or at least appreciatively.
That signals to us they are a good candidate for our program.
Dr. Victor M. Pedro is founder and president of Rhode Island Integrated Medicine, located in Cranston, RI. An accomplished, Board Certified Chiropractic Neurologist, Dr. Pedro pioneered the development of Cortical Integrative Therapy (CIT®)—a breakthrough, research-based treatment designed to address brain and neurological dysfunction in both children and adults.
After remarkable success using CIT® to treat school-age students diagnosed with speech, attention and learning disabilities, Dr. Pedro applied the treatment for use in patients with Reflex Sympathetic Dystrophy or CRPS, dysautonomias, and traumatic brain injury (TBI).
Over the years, Dr. Pedro has lectured extensively on CIT® as a non-invasive, cost-effective treatment for TBI, pain syndromes, dysautonomias, and other brain-related disorders.
Cortical Integrative Therapy (CIT®) has been successful in treating a wide range of painful and debilitating conditions including: ADD/ADHD; apraxia; ataxia; chronic pain; dystonia; dysautonomias; hypotonia; memory difficulties; movement disorders; Parkinson’s disease; Reflex Sympathetic Dystrophy (RSD)/Chronic Regional Pain Syndrome (CRPS); RLS; sciatica; traumatic brain injury; tremors; and vertigo, balance, and gait problems. ©Rhode Island Integrated Medicine
Other keywords in the interview- Inhibitory system, Renshaw cells, Autonomics, Small diameter fibers, Dysautonomias, Limbic system, Antonio DeMazio
http://corticalintegrativetherapy.com/ Cortical Integrative Therapy Rhode Island Integrated Medicine- The Brain Rehabilitative Specialists
http://corticalintegrativetherapy.com/blog/ NBC 10 Health Check Special Report: TBI & CIT® March 04, 2013
~Twinkle VanFleet, California State Ambassador Power of Pain Foundation
If I have mis stated any facts or quotes please contact me at: caambassador@powerofpain.org I will make any corrections immediately. Thank you!
Over the years we have heard that suicides for CRPS/RSD (Complex Regional Pain Syndrome/Reflex Sympathetic Dystrophy) patients is the highest of all suicide rates.
This may not be as necessarily true as it seemed. This also does not entirely mean it’s false.
The following is an excerpt by the Reflex Sympathetic Dystrophy Syndrome Association (RSDSA) –
Suicide and Complex Regional Pain Syndrome (CRPS)
On June 23, 2012, Jill Harkany-Friedman, PhD, spoke to the RSDSA Board of Directors and invited guests on the topic of CRPS and Suicide Prevention. Dr. Harkany-Friedman is the Senior Director of Research and Prevention for the American Foundation for Suicide Prevention (AFSP). RSDSA asked Dr. Harkany-Friedman to speak because of recent suicides in the CRPS community. She assured us that although most individuals have fleeting thoughts of ending one’s life, suicide is relatively rare (12 out of 100,000). Furthermore, 90% of those who die by suicide have a diagnosable mental disorder, i.e. depression, anxiety, alcohol or substance abuse, and a potentially treatable mental disorder. We are posting her PowerPoint® presentation for your information.
I respectfully give all credit to the RSDSA for the above information.
While I respect the educated view of Dr. Harkany-Friedman the thought presents itself that she seems to be stating that nearly all those CRPS related suicides indeed had and underlying mental disorder therefore was the reason they took their own lives. I am not certain though. The estimates were on an over all amount of suicide percentages rather than CRPS specific.
I do apologize in advance for any misunderstandings.
I have rarely ever used offensive language in my posts, but in order for the general masses to understand what I mean in a blunt manner, I will come right out and say it, “Chronic severe pain is a mind and head fuck”. It becomes mental. We all know, at least most of us do, in order for us to feel pain, our brain has to feel it first.
That’s why coping strategies, meditation, relaxation, bio feedback, breathing exercises, guided imagery, aroma therapy and so many other techniques are necessary tools for the management of pain.
I have a hard time believing each of the CRPS suicides also had a mental disorder. Of course we’re mental. That doesn’t mean we have a mental disease, also.
It’s not all in our heads it’s in our bodies!
This also bring up another thought and that is if those suicides were CRPS misdiagnosis’. I hate to bring this up but there are some people who desire to be sick, who seek attention, who thrive on pity, who watch and listen to others for their symptoms so they can take what they learn to their own doctors and claim the same illness. Those people would have mental disorders.
In these cases I would hope the doctor’s were watching the objective findings rather than only listening to the subjective.
A little example,
30 people on a plane
Someone starts coughing and gagging suddenly, itching themselves all over. Making a scene for all to notice.
The person gets out of his seat and stumbles into another passengers and coughs all over him.
That person begins to worry he is catching something. He starts to itch himself.
Suddenly others are doing the same.
Next thing you know every one is hacking, coughing, itching and going nuts.
They all think they’ve contracted some illness, epidemic..
The problem is no one has it’s all in their heads. They only believe it to be true.
The first person never had anything at all. It was just a test.
This only goes to show the power of suggestion.
For some reason I tend to think that if deaths were related to CRPS/RSD we wouldn’t know that it was. Somehow some way it would be found and reported that that there was a psychiatric condition present or un diagnosed and that was the reason behind the suicide. Since nearly all CRPS/RSD patients have been diagnosed with depression secondary their illness, I have a feeling the depression would be used as the cause and not the horrible pain itself.
Suicidal ideations would be almost natural for anyone going through a painful hardship. The mind tries to free itself from ongoing pain and turmoil. It may plan and think of ways out, do things it wouldn’t normally do when more at ease, may even harm, cause bodily injury and so much more.
Self harming, cutting and causing bodily injury isn’t always a sign of suicide or suicidal ideations, sometimes it’s just a diversion to the original pain one is constantly feeling.
I think most CRPS/RSD’rs who have suicidal thoughts don’t really want to die at all, on the contrary they want to live.
They just need help managing their pain and most of them aren’t getting it.
~Twinkle Wood-VanFleet
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