RSD Patient Seeks Community Support

Posted by twinklev

In a telephone interview yesterday May 14, 2013 a Reflex Sympathetic Dystrophy patient stated she has temporarily lost custody of her 16 year old son to Department of Services for Children, Youth and Their Families (DSCYF) and they are trying to remove her 9 year old daughter. The patient from Delaware shared that the vibrations and sensitivity to her hearing has been documented by her doctor and that children services believes she has a mental disorder. Apparently a case worker for the State did a search for CRPS/RSD and found an article which included “Emotional Disturbance” as part of the condition and is using this against her.

Let me try to be more specific while CRPS/RSD can cause a number of secondary symptoms it absolutely does not mean everyone will have them. Unless your doctor has diagnosed you with a mental disorder I do not think this type of state worker is qualified to do so this way. And certainly not by Google search.

Jim Moret, Host of Inside Edition, Attorney and Author of The Last Day of My Life describes his own journey with his son’s CRPS diagnosis in When Pain Becomes the New Normal.

Many of us already face the stigma involved with Complex Regional Pain Syndrome formerly known as Reflex Sympathetic Dystrophy first discovered during the civil war by Silas Weir Mitchell. It is not a mental disease or disorder. It is a physical condition which begins with physical characteristics and symptoms. www.powerofpain.org www.rsds.org

Because this illness is so misunderstood and because there are still so many that are uneducated regarding it’s existence patients face anything from “but you don’t look sick” to “you must be a drug seeker”. This disease does not discriminate! Even children can develop it.

A very high percentage of us, I don’t have the exact statistics, yet I’d guess it to be in the high 90 percentile were active members of society, we worked, raised children, were active in our lives, if single parents raised children alone, some of us had everything, others like myself had enough to just be happy.

Now let me ask you this…

Why would we give all that up for this?

I admit I worry about the single mothers out there with CRPS/RSD who lack family support. Especially when the family does not believe in the illness and when the patient is on disability and the family thinks the patient should be working. Again no education and understanding.

Many don’t even want to know. Do you know how many times I have listened to patients tell me how they tried to reach out to their families, spouses, children with educational material, videos etc, just to learn those people were not interested?

To me it’s no different than learning about Parkinson’s, Heart Disease, Diabetes or any other illness. Would you be interested in that?

This is why ongoing awareness for Complex Regional Pain Syndrome/Reflex Sympathetic Dystrophy is so very important and why the power of community is just as important.

There are many disabled parents out there in the world caring for their children.

Each CRPS/RSD patient should be treated on a case by case basis, we should not all be clumped together, one size does not fit all, but the diagnosis is the same.

Autumn asks for your help. She asks that anyone who can come forward to write a letter on her behalf, make a phone call or support her in any way to email her at: Autumn Stevens

~Twinkle VanFleet

Sacramento Area to Offer Ketamine Treatment for Reflex Sympathetic Dystrophy (RSD) and Fibromyalgia Patients

Posted by twinklev

DeBruin Medical Center

9352 Madison Ave. Ste.1

Orangevale, CA 95662

(916) 989-2929

Monday-Friday 8am-5pm

I am pleased to announce that Dr. Mark DeBruin of DeBruin Medical Center will soon be offering Ketamine Treatment to RSD/Reflex Sympathetic Dystrophy Syndrome and Fibromyalgia patients.

Dr. DeBruin uses the same protocol as Dr. Schwartzman and Dr. Getson to give his patients the best opportunity to achieve a remission. He also offers boosters and follow up medical care as needed.

The doctor is accepting Workman’s Compensation insurance, Personal Injury cases, and pre -approved insurance coverage. He will also be taking cash patients at $1000 per day.

Dr. DeBruin, a Diplomat of the American Board of Family Medicine is a well respected physician who has practiced medicine for over 18 years.

He completed his medical school training and Internship at Chicago College of Osteopathic Medicine in 1988 and his residency in Family Medicine at San Joaquin General Hospital in Stockton, California in 1990.

Upon receiving his board certification in Family Medicine, Dr. DeBruin opened his private practice on 9352 Madison Ave. Ste.1 where he still resides today.

Since this new clinic is still forming you may not find much information on it yet as it is still in it’s infancy, but rest assured IV-Infusion therapy with a Ketamine cocktail is finally here in the Sacramento CA area.

We have waited a very long time for a clinic to reach the Greater Sacramento Area and it is with my hope that 1000’s of fellow patients receive the relief in pain levels they so desperately deserve.

Like any intervention we have to play a major role in our own recovery and perhaps in our own remission. The Ketamine and doctor will be our tools, our boosts, our helpers, that help we’ve longed for, but we will have to get up and move with it afterward, change the sedentary lifestyle we’ve become accustomed to due to our chronic pain and disabilities and take advantage of the success!

“Yours, if you choose to accept it” ~Barby Ingle

The process of getting the treatment will not happen over night. One must have patience. Last month became 12 years since the injury that caused my RSD. I’ve also experienced Fibromyalgia for the last 10. If it takes another 3 or even 6 months, I still truly have something to look forward to.

My process for the treatment has begun and I look forward to a “Remission Possible” ~Barby Ingle

It was my experience that I would be responsible for getting my treating doctor to order the heart, Psychological clearance, lung clearance and blood tests required to go forward with my Ketamine treatment with Dr. DeBruin.

Dr. DeBruin has made arrangements with hotels near his medical center for patients and families to stay at a remarkably reduced price. Please speak with his office staff for details.

I will continue to update you with more information as it shared with me by my source.

For further information about the Ketamine Treatment, please contact barby@powerofpain.org or call 480-882-1342 at the Power of Pain Foundation

Or if I can be of any assistance myself Twinkle CAAmbassador@powerofpain.org

Now I Lay Me Down… (An RSD/CRPS Poem)

Posted by twinklev

This poem is dedicated to all my RSD/CRPS brothers and sisters. It was written only a few months ago. For many years I had a popular poetry site called Golden Rainbow Poetry and became Golden Rainbow Poetry Creations as it evolved. I had a small business license back then under the same name.

Many of my poems have been lost, some have been found and others are hopefully backed up on a drive I have not located yet. From my earlier years of writing there is a journal type book somewhere that has dozens hand written in. I am hoping it is in the garage in a box.

Soon I will begin to share the ones I do have available. Some have been published in both hard print and audio, in hard bound compilations of 100’s of poets together in 1 book, 4 of my poems live inside those, others on various internet sites. I wrote a poem for 911 that is on audio. The project was published as both hard bound book with an audio CD, mine made it to the audio part.

Each of my poems have a mood, some in imagery that leaves the reader to wonder the meaning and also to connect with the words themselves.

Some of these poems could come from the reader themselves. It could be anyone, anywhere and at anytime.

It is still Nervember (November) National RSD/CRPS Awareness Month. I hope the poem above brings a bit of awareness to those who can’t seem to grasp the meaning of RSD/CRPS. Or… What it feels like.

A special thanks to Barby Ingle, Trudy Thomas, Chris Greulich, and the Power of Pain Foundation.

Thanksgiving is less than 2 days away. I have much thanks to celebrate. Especially for the having the very best husband in the world, my children, grandson and the fire in my flesh and bones I survive however hard.

I am thankful for those friends mentioned above. I am thankful for my mom, sister and extended family. I am thankful for being here to help others, I am thankful for those who help me.

Happy Thanksgiving!

Always be as well as you can be

Wishing each of you pain eased days and nights…

NERVEmber (November) is National RSD/CRPS Awareness Month!

Posted by twinklev

November is our nationwide Reflex Sympathetic Dystrophy (RSD), Complex Regional Pain Syndrome (CRPS) Awareness Month!

The Power of Pain Foundation calls this Nervember. There’s 2 meaning’s behind it and I hope that I’m explaining it properly. Nerve of course would be for nerves, and the nerve pain and/or damage we experience and ember, coals, fire, what our pain feels like. Barby Ingle Executive Director of the POPF explains during her hour long interview on the Living with HOPE Radio show Monday October 29th, 2012.

You should be able to find that episode here: Living with HOPE with Guest Barby Ingle http://www.blogtalkradio.com/thebodymindandspiritnetwork/2012/10/29/living-with-hope

The episode is still availabe in the archives to either be listened to from Blog Talk Radio or by download. Barby also discusses several upcoming events for Nervember. Including a full day 6th Annual Arizona State Management Conference Webinar November 3rd, 2012.

For a really great blog, don’t forget to visit: Patient Awareness by the Power of Pain Foundation at www.PatientAwareness.org featuring writer and editor Chris Greulich. Still in it’s infancy, born only a few months back, you won’t want to miss this one. It’s growing by leaps and bounds. So much more pain and patient related information to come.

I can’t wait!

Patience Grasshopper…

Please support a loved one, friend, colleage, or even an acquaintance that you know who may be suffering from and attempting to survive this painful and debilitating neuro inflammatory auto immune disease. Even those you don’t know need your support.

We ask that you wear Orange as many times as possible throughout the month of November. Whether it be an awareness bracelet, clothing, anything. If you don’t have anything on hand, you can get into the spirit with us by making yourself an orange tag that say’s “I Support RSD/CRPS Awareness” or “I Hope for a Cure for RSD/CRPS”. Use your imagination, we’ll be thankful to you!

1000’s are getting together on November 5th, scattered throughout the world to wear orange in support of RSD/CRPS awareness day. The link to Rebecca Hale’s page is- https://www.facebook.com/events/251987344922784/

Don’t forget to tell everyone that you know to wear orange too and why. The more people you teach and who become educated in why we’re doing it can pass on what they’ve learned to the next person while wearing their orange and that person to the next..

and that person to the next..

If we all take part soon enough more and more people out there will become familiar with the words.. the letters..

R S D C R P S

Then we can rest easy and begin again.

What are you doing to this month in the name of RSD/CRPS awareness? Would love to hear from you!

Jackie Jurek Appearing with the Power of Pain Foundation at Convoy of Hope Sept 15, 2012

Posted by twinklev

Introducing Jacqueline Jurek, a contestant in the nationally televised “Miss CALIFORNIA USA” Pageant, Jackie will be representing Folsom Cali USA and has joined the team at the Power of Pain Foundation.

Jacqueline Jurek is an aspiring neuropsychologist from Sacramento, California. She graduated High School in 2007 with honors at El Camino Fundamental and went on to SDSU where she recently graduated in May of 2012 with a Bachelors of Art in Psychology. She is currently in the process of applying for Clinical Psychology Grad School at Sac State While taking EMT classes at a Local Community College and interning with the Sacramento Country Coronors office in the Invesigative Department. In her spare time Jackie enjoys the outdoors, staying fit, and spending time with family and friends. Swimming, hiking, country concerts, and being involved with her church are among the activities she enjoys the most. She’s all for standing up for what you believe in, striving for your goals, and making sure not to take life too seriously that you forget to enjoy it.

As a contestant in the the nationally televised “Miss CALIFORNIA USA” Pageant, Jackie will be representing Folsom Cali USA and is excited to join the team at the Power of Pain Foundation with her passion in neuropsychology and is ready to help make a difference in her community and her fellow neighbors.Jackie will be making a special appearance at this years Convoy of Hope being held at the Cal Expo on September 15, 2012 where we will be distributing valuable and informative pamphlets, books and materials on Reflex Sympathetic Dystrophy, Complex Regional Pain Syndrome/Causalgia and Neuropathies, raising RSD/CRPS awareness, answering questions, having a photo book of RSD/CRPS limbs available for viewing, a free raffle and more.

Reflex Sympathetic Dystrophy Type 1, Complex Regional Pain Syndrome Type 2/Causalgia is a painful, debilitating, neuropathic and auto immune disorder. Reflex Sympathetic Dystrophy Syndrome (RSD) also known as Complex Regional Pain Syndrome (CRPS)/Causalgia is an illness first discovered by Weir Mitchel during the Civil War. Over 10 million people have been diagnosed in the U.S. Alone. The McGill Pain Index rates RSD a 42 out of 50 and is listed as the most painful chronic disease that is known. While it seems as if it is a rare disease it’s not, yet not many know about it. It’s our goal to change that.

RSD/CRPS is a physical condition. Any depression or psychological manifestations are secondary do to the illness and due to the fact it is so painful to live with.

Practical Management of Complex Regional Pain Syndrome
Eric S. Hsu, MD*

Abstract: Complex regional pain syndrome (CRPS) describes a diversity of painful conditions following trauma, coupled with abnormal regulation of blood flow and sweating, trophic changes, and edema of skin. The excruciating pain and diverse autonomic dysfunctions in CRPS are disproportionate to any inciting and recovering event. CRPS type I is formerly identified as ‘‘reflex sympathetic dystrophy.’’ CRPS type II is the new term for ‘‘causalgia’’ that always coexists with documented nerve injury. The present diagnostic criteria of CRPS I and II depend solely on meticulous history and physical examination without any confirmation by specific test procedure (or gold standard). There are only few clinical studies with large-scale randomized trials of pharmacologic agents on the treatment of CRPS. Bisphosphonates have been studied in multiple controlled trials, based on theoretical benefit of bone resorption, to offer pain relief and functional improvement in patients with CRPS.Many current rationales in treatment of CRPS (such as topical agents, antiepileptic drugs, tricyclic antidepressants, and opioids) are mainly dependent on efficacy originate in other common conditions of neuropathic pain. There are additional innovative therapies on CRPS that are still in infancy. No wonder all the treatment of individual CRPS case nowadays is pragmatic at best. Although the interventional therapies in CRPS (such as nerve blockade, sympathetic block, spinal cord and peripheral nerve stimulation, implantable spinal medication pumps, and chemical and surgical sympathectomy) may offer more rapid response, yet it is still controversial with unpredictable outcome. Nevertheless, we need to start pain management immediately with the ambition to restore function in every probable case of CRPS. An interdisciplinary setting with comprehensive approach (pharmacologic, interventional, and psychological in conjunction with rehabilitation pathway) has been proposed as protocol in the practical management of CRPS. It is crucial to have a high sensitivity value combined with a fair specificity in revising diagnostic criteria of CRPS. The validation and consensus for new rationalized diagnostic criteria of CRPS could facilitate further research to enhance clinical outcome including quality of life. These endeavors to minimize suffering from CRPS would certainly be appreciated by many patients and their loved ones.

keywords: complex regional pain syndrome, reflex sympathetic dystrophy, causalgia, pharmacologic

http://www.rsdsa.org/pdfsall/Hsu_AmJTher_2009.pdf

More recently we have learned that RSD/CRPS is a Neuro Inflammatory and Neuroautoimmune disorder. It can effect any part of the body. It can spread from a single limb to several and it can involve the internal body as well. This does not happen in all patients, but it can happen.

Not only will Jackie be representing the Power of Pain Foundation with me, but she will be available to take photos and sign autographs with the guests that come to our booth. Come support Jackie, the Power of Pain Foundation and the Convoy of Hope at this spectacular event! We hope to see you there! September is Pain Awareness Month!

If you have any questions or for further information

Contact: Twinkle VanFleet

CAAmbassador@powerofpain.org

916.850-0RSD(0773)

(This # is not for personal use)

www.PowerofPain.org