2013 CRPS/RSD Awareness Walk hosted by Dr. Philip Getson, DO

2013 CRPS/RSD Awareness Walk

This year’s walk is hosted by Dr. Philip Getson, DO and the Chairman is Dawn Hesser.

Date: Saturday, September 21, 2013
Location: Cooper River Park, Pennsauken Twp., New Jersey
Time: 8 am Registration, 9 am Walk starts
Registration: Click Here to register for the walk
Contact: Jim Broatch jwbroatch@rsds.org or 877.662.7737
Questions please email: crpsrsdwalk@gmail.com

Executive Vice President and Director
The Reflex Sympathetic Dystrophy Syndrome Association (RSDSA)
99 Cherry Street
Milford, CT 06460
www.rsds.org
877-662-7737
203-882-8362 (f)

RSDSA :: Reflex Sympathetic Dystrophy Syndrome Association

www.rsds.org

Macy’s Shop for a Cause Saturday, August 24, 2013 Please help RSDSA provide education, support, and hope to all  http://www.rsds.org/index2.html

Shop for a Cause

Macy’s Shop for a Cause at RSDSA

 

The above walk is hosted during Pain Awareness Month.  Please be supportive!

~Twinkle V.

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RSD Patient Seeks Community Support

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

CRPS/RSD and Suicide

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

Action Alert: Physicians for Responsible Opioid Prescribing (PROP) We must stop this Petition!

October 11, 2012
Greetings!The RSDSA would like to make you aware of a petition currently before the Food and Drug Administration (FDA) that requests labeling changes for opioid analgesics (narcotic pain medications). Since many individuals with CRPS rely on opioids as part of their medication regimen, we wanted to bring this petition to your attention.

The petition, submitted by Physicians for Responsible Opioid Prescribing (PROP), requests three specific changes to opioid analgesic labels:

1- That they no longer be prescribed for “moderate” noncancer pain, but only for “severe” noncancer pain

2- That the maximum allowable dosage per day be equivalent to 100 mg of morphine for noncancer pain

3- That this medication can only be used for a maximum duration of 90 DAYS.

What this petition appears to mandate is a “one size fits all” prescribing mentality which DOES NOT benefit the chronic pain patients in general and CRPS patients in particular.

The RSDSA has chosen to oppose the PROP petition on behalf of you, our members. On Wednesday, October 10th, The RSDSA sent this opposition letter to the FDA.  Cick Here to read RSDSA letter . 

For those of you who would like to send your own individual response regarding PROP to the FDA, we encourage you to stress the specific details that your medication enables you to do that without it you would be unable to do. We suggest you use the following language to keep the message clear: My name is  _______. As a person  who suffers with the chronic and  yet incurable pain of  CRPS,  I ask the FDA to deny the PROP petition. I use opioids as prescribed by my physician allowing me to function better and partake in life in ways I would be unable to do without this prescribed care.

To send your comments to the FDA click here.
The category to use for your response is Individual Consumer.

Your immediate action to this issue will make a difference. To read the PROP petition,
Please forward this email along to your friends and loved ones.
Should you have any questions or would like to receive further information, please email or give me a call.
Sincerely,
JB Signature
Jim Broatch
Executive Vice President and Director
RSDSA
877-662-7737
203-877-3790
 Original Article- http://myemail.constantcontact.com/Urgent-Action-Requested–CRPS-Treatment.html?soid=1101383336163&aid=UTz5u591sNA