Complex Regional Pain Syndrome | Diagnosis using the Budapest Criteria – Specialist Pain Physio Clinics

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The Budapest Criteria should now be used to diagnose Complex Regional Pain Syndrome (CRPS):

A: The patient has continuing pain which is disproportionate to the inciting event

B: The patient has at least one sign in two or more of the categories

C: The patient reports at least one symptom in three or more of the categories

D: No other diagnosis can better explain the signs and symptoms

Sensory: Allodynia (to light touch and/or temperature sensation and/or deep somatic pressure and/or joint movement) and/or hyperalgesia (to pinprick)

Vasomotor: Temperature asymmetry (more than 1 deg.) and/or skin colour changes and/or skin colour asymmetry

Sudomotor/oedema: Oedema and/or sweating changes and/or sweating asymmetry

Motor/trophic: Decreased range of motion and/or motor dysfunction (weakness, tremor, dystonia) and/or trophic changes (hair/nail/skin)

Signs – see or feel a problem

Symptoms – patient reports a problem

via Complex Regional Pain Syndrome | Diagnosis using the Budapest Criteria – Specialist Pain Physio Clinics.

Additionally –

Validation of proposed diagnostic criteria (the “Budapest Criteria”) for Complex Regional Pain Syndrome.

Shared previously

Ask the Expert: Complex Regional Pain Syndrome (CRPS)

Online Health Chat with Michael Stanton-Hicks, MD

April 30, 2014

‘Placebo therapy’ ineffective for long-term chronic pain relief

Posted by twinklev

December 11, 2014

Dr Andreas Goebel, from the University’s Institute of Translational Medicine, explains: We found that patients experienced significant pain relief minutes after a placebo therapy, such as salt water injections, but unexpectedly at a later time, and even with repeated placebo applications, there was minimal or no impact on reducing the symptoms of the condition.”

The results suggest that CRPS will not improve naturally over time, and there is little fluctuation in the pain intensity of the condition.

Pain Medicine News – Complex Regional Pain Syndrome: Pathophysiology, Diagnosis, and Treatment

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ISSUE: DECEMBER 2014 | VOLUME: 12(12)

“At least 50,000 new cases of CRPS are diagnosed in the United States annually.1 Although the incidence rate is subject to debate, a large epidemiologic study from The Netherlands involving 600,000 patients suggests an incidence of 26.2 per 100,000 individuals.”

Spinal Modulation Completes Enrollment of Its Landmark U.S. Pivotal Trial Evaluating the Axium Neurostimulator System for Chronic Pain | Business Wire

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The ACCURATE study enrolled 152 patients at 22 centers throughout the United States. This represents the largest neuromodulation study to be conducted in patients suffering from nerve injuries (peripheral causalgia) or complex regional pain syndrome (CRPS, also known as RSD) to date.

“Approximately 10-50% of patients who undergo common procedures like hernia repair, knee surgery, and other lower limb surgeries will suffer from chronic pain resulting from nerve injury2. These conditions have historically been difficult to treat with currently available technology,” said Dr. Timothy Deer, co-study lead and CEO and President of the Center for Pain Relief in Charleston, West Virginia. “The ACCURATE trial is a landmark study that could change the way we treat these chronic pain conditions. Results from prior European studies have been promising, and we are hopeful that the ACCURATE trial will continue to substantiate the effectiveness of this therapy for our patients.”

RSD MEDICAL TREATMENT EXPENSE by Sara Elizabeth – GoFundMe

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Pain Awareness Month 2014

Help Sara move forward in her life by considering to support her medical treatment fund. Sara, like many of us has CRPS/RSD and is trying hard to work toward her dreams.

RSD MEDICAL TREATMENT EXPENSE by Sara Elizabeth – GoFundMe.

Nerves, Estrogen, Dr. Mikovits and Paradoxes: The INTiDYN Approach to Fibromyalgia and Chronic Fatigue Syndrome

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“They used their ability to provide detailed analyses of microvasculature and the vascular sensory and autonomic nerves innervating the skin in their Fibromyalgia study. That study grew out of work they’d done with chronic regional pain syndrome CRPS patients.”

via Nerves, Estrogen, Dr. Mikovits and Paradoxes: The INTiDYN Approach to Fibromyalgia and Chronic Fatigue Syndrome.

Author Donna Nefferdorf Releases “To Know Him Is To Love Him”

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– A Real Story of Healing With the Help of the Creator

Physical, emotional and spiritual challenges can be part of life. Author Donna Nefferdorf has faced them all and tells how she has been able to overcome these challenges with the help of the Great Physician in her new book “To Know Him Is To Love Him.”

The early response from readers to this heart-felt tale of faith has been remarkable.

July 12, 2014

No one can honestly deny the world is filled with suffering; physical illness, disease, and mental scars that have carried on for generations. Is there a way to heal? And is it open to each and every person, if they open up to be healed? This compelling subject is addressed, by author and minister Donna Nefferdorf in her recently released book “To Know Him Is To Love Him” that tells her real-life story of facing these kinds of issues and overcoming them, with the help of her faith and the Creator. Readers are reacting to the honesty and delivery of this message of hope, with enthusiasm.

“I really believe my book offers true hope and healing,” commented Nefferdorf. “To Know Him Is To Love Him, reveals the ‘power of God’s love’ to help anyone overcome their own life challenges. I’ve experienced this power of healing myself, and it’s a blessing to be able to share this experience with my readers.”

The book was published by Advanced Global Publishing in Shippensburg, PA, on June 27^th, 2014. It’s currently available across multiple formats including as a paperback through Amazon.com and BarnesandNoble.com and as an ebook from Ingram.

According to Advanced Global Publishing their goal of publishing the book, as well as all of their publishing projects is, “Sharing the love of God one heart at a time to advance the Kingdom of God on earth”. It’s very clear that “To Know Him Is To Love Him” is a book that embodies that goal, an effort to show the power of the divine to heal everyday problems and bring happiness and fulfillment. Nefferdorf eloquently helps readers boost their confidence, self-image, courage, and compassion as they come to see in life they are never alone while battling serious health problems, even life threatening ones, or in better times when they enjoy abundant life as the Creator intended.

Nefferdorf is a minister with Global New Beginnings, which aims to lead others to a “new beginning” with the Father, through a personal relationship with Jesus Christ.

According to early reviews, this new book should go a long way towards inspiring others to explore this relationship.

Evangelist Janice Hollan, recently said, “This book is my friend’s new release and God blessed me to endorse it! I would encourage all to read it! You will find hope, healing, and encouragement in your own life through the testimony of her storms!”

For more information be sure to visit http://www.globalnewbeginnings.com.

Donna is an RSDS Survivor and her story will tell you how. ~T

Nobody Said It Was Easy..

Posted by twinklev

Sometimes people only see what they want to see, hear what they want to hear, but do they really “hear” , “see” it”? It’s all perception! We live in a world of perception and deception especially online. The typed word is “perceived as “tone of type”. People take from it what they will. Imagination goes with it, fantasy, an idea of who or what you are. Tone of Type means how the other person takes your post, how they imagine it as if it came from your lips. It may not be what it is intended to be though after all there really is no tone, there is no voice, there is no body language.. it’s all the typed word. No seen or heard emotion. Nothing to actually base the tone on. I’ve shared so much through Social Media over the years, but I assure you, even with those who I thought were “friends”, I’ve never shared everything.

Since December of 2012 my life, our lives have changed drastically, but let me be fair in saying that just because I haven’t shared like I used to that it hasn’t continued.

(I know some of you know)

Due to betrayal, I haven’t revealed what I might have. I’ve shared pieces and parts. At the end of 2013 I learned a valuable lesson. One that carries with me. I already had reservations and a trust issues.. that person only reminded me that barriers and walls are meant to be kept up.

My husband had already had 2 heart attacks, he had 2 stents in his heart since he was 37 when the first occurred. The second occurred in 2011 if my memory is serving me correctly. Not many months after that our son, who was a freshman at the time sustained several brain injuries that still exist today, so while I praise all of his efforts and good deeds online, we are still working to relieve him of symptoms, like breathing, smelling and other issues. I will not be ashamed to say that he was diagnosed with ADHD and was on Adderall for it for some time. By choice, partly his choice, we decided to go off the Adderall over a year ago and let his body take it’s course. He’s strong! He’s young! My Lil ‘ OZ! My husband had a quad bypass 17 months ago and is still dealing with Diabetes, Neuropathy, and the aftermath. He takes 11 medications upon waking, 4 in the afternoon, 11 at bedtime. I could care less about me anymore, even though it’s hard. Yep, hard! He took care of the me, I couldn’t keep up on so much, now I have to pull for all of it and I …

Will!

Some people think because I have hope in my heart, once every 3 months or so that I’m able to go out that I think my shit don’t stink, that I’m better than someone else…

I’m not! Nor would I ever think it. Seriously? ! I’ll be the play’a in my own game!

A pretty outfit, a little make-up, one leg leaning to the hard left while the other holds it up, wheelchair in the van, the stick out of view, but no one knows..

Invisible diseases are even invisible among the very people they should be acknowledged from.

Even those in remission are looked down upon, I mean you can’t have a bad day, you’re in remission, right? Wrong! Remission only means an absence of symptoms for a time being it doesn’t mean that no symptoms will present.

A time being can be minutes, hours, days, weeks.. there is no absolute!

Those people still hurt too, still feel fatigue and get sore, wear down more quickly than someone without an illness.

I’m not in remission! I just understand those who are.

Now have a CRPS patient taking care of another ill disabled person… add struggles, surgeries, life, precious children, the grand baby. This has been my life. As my son approaches another surgery next week…

When you think you’ve had enough and you can’t go on…. Go On!

Don’t ask me how I do it..

Auto pilot!

Don’t ask me how I feed the dogs, the cat, love my children, my grandson, my family, however distant…

Or how I take care of my grandson…

Don’t ask me about me..

Don’t even ask me how I lift my eyes..

Just know that I do..

~ #TVa

#StrongerThanPain

(But he leaned in and whispered it might be worth it)

I originally wrote this weeks ago and used the same title recently on FB to show how proud I am of my (our) grandson De’Mantai Xayvier Howard who made 8 consecutive honor rolls and graduated at the top of his second grade class (and the entire school) . … (this post was written before that and left in drafts)

Reflections Of…

Posted by twinklev

The last week has been a bit overwhelming and my previous post somewhat confrontational. That is not the image I want left etched in the minds of my readers, followers or the communities in which I’m involved. I do not belong to a single community, but several. Contrary to what has suddenly become popular belief I am not hateful, bitter or spiteful. I have never in my lifetime been out to hurt anyone, I have only ever helped others. Before the injury which led to my CRPS I took care of children that weren’t my own, one had no blood relation to me or my children, other’s were by blood and did not include my own. I breast-fed a child that wasn’t mine because her own mother couldn’t and the baby couldn’t take any type of formula. I saved that baby’s life. I had happened to just give birth to my second daughter 2 weeks before and so was able to be a surrogate for her.

I cared for 2 dying people. I literally closed one of their eyes upon passing. I was not even old enough to really be put in the position to, but I was and I did.

I’ve lived a life of service.

Before I entered the CRPS Community, I was a controversial writer, reporter, small time. Published in various areas of writing, soft erotica, dance, poetry, I owned a small publishing business for a time on top of a 60 hour work week working for someone else and I was still busy doing for other’s.

I’m not here to sugar coat anything. And especially not from the last few days.

I’ve had attempts to add me to friends lists with names such Nancy Drew (Hardy Boy’s Nancy Drew Mysteries, remember those days?) I had a Mary Mack on my list that I didn’t realize was there (Mary Mack Mack Mack all dressed in black black black with silver buttons buttons buttons all down her back back back, remember the old kids clapping game?) and several other fictitious play names have tried to add me My support group has an influx of people attempting to join. I’ve had pages go up about me, one taken down, I’ve been called awful names, I’ve been told I’m going to be sued, I’ve been apologized to, and told if the person knew my name they would address me by it. I didn’t understand this all day yesterday because the person was messaging me to my name. Then I realized she must think I’m using a nick name. So many of them do. It was assumed I was also.

I’ve been kicked out of what I will call a group to give it anonymity., I will not mention the name and if asked I will not tell you. I honestly do not know if it’s common knowledge or not. All those involved were removed from what I understand. It did seem a little odd for me as I had not posted there at all. I cannot let it hurt me, anymore. I admit that it did! Very much so! I have no animosity toward the administration for their decision.

While many are very upset with me, I do not have any regrets in regards to letting everyone know that the information I posted in the comment section of the previous post was truthful and accurate.

My only regret if it’s even a regret at all is that when push came to shove I shoved back with a vengeance.

Would I do what I did again? I’m not sorry to say, yes! Yes I would! I don’t need popular to survive, I only need to survive. I am not just a CRPS survivor, no….

I am simply a survivor!

My life has shown me that from the very beginning in all it’s let me see and feel for myself.

I wish you all pain eased days and nights,

Proof of my name is included.

~Twinkle VanFleet

FAQ: Reflex Sympathetic Dystrophy | The Dr. Oz Show

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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.