Announcements:

If you would like your RSD or RSD Awareness event, meeting or announcement added to this page please email admin@rsdawareness.com with the details. We will get them added as quickly as possible.

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Posted on 4/24/2005

Paula Abdul Takes Enbrel for Arthritis, Not for RSD

RSDSA received the following memo from Daniel J. Wallace, MD, FACP, FACP, Paula Abdul's Physician.

"Thank you for your note, but I must clear up one misunderstanding which was published and perhaps you can help our office.

First, Paula has been treated with Pamidronate for her RSDS.

Second, she is on Enbrel for an inflammatory arthritis, which is unrelated to her RSDS.

The patient has waived HIPAA rules and allowed me to explain this to you."

 

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Posted on 4/21/2005

Dear RSD Supporters:
We regret to inform you that the RSD Awareness Bill will not advance anywhere in the Oregon Legislature this year.
The Legislators feel that it basically repeats the role of the Pain Management Commission (PMC) , which was created in 2001.

Below are the important sections of SB 885, which describes the role of the PMC.
You can view the complete legislation at: http://www.leg.state.or.us/01reg/measures/sb0800.dir/sb0885.en.html
You can view the website for the PMC at: http://www.oregonpain.org/ Besides promoting education and awareness on pain conditions, the PMC works some with the BME (Board of Medical Examiners) (the licensing board for MDs & DOs) regarding physicians' efforts to give proper doses of pain medications for pain patients.

When I presented the RSD Awareness legislation to the PMC in March, the Commission members voiced support of RSD awareness.
The PMC has just finished the task of creating a one-hour video that most all healthcare practitioners in Oregon must view,
so they will now have more time to tend to other tasks of the Commission.

I and others will encourage the PMC to give more attention to individual pain diseases, beginning with RSD.
We will suggest that the PMC to highlight one pain disease every 2 months, at their bi-monthly meetings.
They could invite representatives from the national and/or state organization/s
to speak at the PMC meeting and educate the PMC members about the disease, difficulties, needs, etc.
National reps could be brought in by speaker phone.
The PMC could then create a page on their website to educate practitioners about that pain condition.
I have been talking with one of the PMC members and she wants to actively work on this idea.

Feel free to email me, however I will be gone from April 19 until mid-May.
On my return I will keep you posted on the progress we make on RSD Awareness in Oregon, and how you could participate.

Sincerely,
Natalie Arndt



Senate Bill 885
71st OREGON LEGISLATIVE ASSEMBLY--2001 Regular Session Sponsored by Senator DUKES; Senators BURDICK, CASTILLO

Summary: Relating to pain management; creating new provisions; amending ORS 675.110, 677.228, 677.510, 678.101, 684.092 and 685.102;
and appropriating money.Be It Enacted by the People of the State of Oregon: SECTION 1. { + (1) The Pain Management Commission is established within the Department of Human Services. The commission shall:
(a) Develop a pain management practice program for providers;
(b) Develop pain management recommendations;
(c) Develop ways to improve pain management services through research, policy analysis and model projects; and
(d) Represent the concerns of patients in Oregon on issues of pain management to the Governor and the Legislative Assembly.
(2) The pain management coordinator of the Department of Human Services shall serve as staff to the commission. + } SECTION 2. { + (1) The Pain Management Commission shall consist of 19 members as follows.... SECTION 3. { + The Pain Management Commission shall:
(1) Develop a pain management education program curriculum and update it biennially;
(2) Provide health professional regulatory boards and other health boards, committees or task forces with the curriculum; and
(3) Work with health professional regulatory boards and other health boards, committees or task forces to develop approved pain management education programs as required. + }

 

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Charlena Aguilar has requested that RSDSA send this alert to our e-alert community. RSDSA supports the American Chronic Pain Association's initiative to declare September, Pain Awareness Month.

Petition #918799248 - September as "Pain Awareness Month"

This petition will be submitted to the National Governors Association to make September "Pain Awareness Month." My goal is 5000 signatures, but I would love to have many more.

The petition is at - http://www.thepetitionsite.com/takeaction/918799248

The petition's goal is to make Americans aware of pain's impact on society and to promote the Pain Care Bill of Rights.

 

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We are seeking information from people who have had ketamine treatments.

This information will be used for informational purposes only, and possibly an article.

If you have had ketamine treatment, could you please share your experiences and try to answer as many of the following questions as you can?

What type of ketamine treatment did you have?
Intravenous- in hospital or out of hospital, for how many days and was it mixed with any other medications,
Induced coma- where and for how long, and
was it combined with any other type of treatment.

What percentage of pain relief did you have?
What type of pain was relieved, for example: allodynia, deep joint pain, burning pain, etc.
Did this pain relief increase your ability to function and how?
Did you get relief from any of the other symptoms of CRPS/RSD, for example, edema or contractions?

How long did this percentage pain relief continue and did it change slowly or quickly?

Have you had any follow-up ketamine treatments?
How long after the first treatment?
What type of treatment was the follow up?
Did you get pain relief from the follow up treatment and was the pain relief equal to, better than, or less than the first treatment, if possible give a percentage of pain relief and tell us what type of pain was relieved.

Did you have any other changes in your RSD treatment during this time.
For example, less pain medication or a new medication or an infusion pump?

What would you like people with CRPS/RSD, doctors, and insurance companies to know about the ketamine treatments that you had.

Thank you very much for your helping all of us understand how ketamine treatments work from the understanding of a person with CRPS/RSD.

Please send your replies to info@rsds.org. Thank you.

Best of health, Jim Broatch

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