If You Live in These States and Have CRPS You Can Help

If You Live in These States and Have CRPS You Can Help

November 4 is “Color the World Orange” day which is part of November as CRPS/RSD Month.

Complex Regional Pain Syndrome (CRPS), also known as Reflex Sympathetic Dystrophy (RSD), is a chronic pain condition characterized by continuous, intense and often burning, pain that is out of proportion to the severity of the original injury.

A great way to get involved with Color The World Orange™ is to reach out to local and state politicians to request a proclamation naming November as CRPS/RSD awareness month or Nov. 4, 2019 as Color The World Orange™ for CRPS/RSD Awareness day. A proclamation is an official, though non-legal, recognition that brings attention to a subject.

According to organizers, there are 18 states that still need applications for state or local proclamations.

In alphabetical order they are: Alaska, Colorado, Hawaii, Idaho, Maine, Maryland, Massachusetts, Mississippi, Montana, Nevada, New Mexico, North Dakota, Oregon, Rhode Island, South Dakota, Utah, Vermont, and Wyoming.

To Get Started: Look on the website of your local politician as well as your governor for information about requesting a proclamation — many will list a specific contact to reach out to or have a link to apply directly on the governor’s website. If there isn’t a section on the website, call the main office number and ask to speak with someone who works on proclamations. If they ask for more information, you can direct them to the Color The World Orange™ website.

If you are asked for sample language, you can send the following:

Whereas: Complex Regional Pain Syndrome (CRPS), also known as Reflex Sympathetic Dystrophy (RSD) is a nerve disorder that causes chronic pain.

Whereas: The symptoms of CRPS/RSD are often described as burning that is out of proportion to the severity of the initial injury and can include swelling and extreme sensitivity to touch.

Whereas: While CRPS/RSD was first identified during the Civil War, it remains a poorly understood condition. There is no cure.

Whereas: The National Institute of Neurological Disorders and Stroke and other institutes of the National Institutes of Health support research relating to CRPS/RSD.

Whereas: Members of the CRPS/RSD community will spread awareness in November.

Whereas: On Nov. 4, 2019, members of the CRPS/RSD community will celebrate the sixth-annual Color The World Orange day to spread awareness of this poorly understood pain disorder.

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Authored by: Staff

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I can’t imagine why my good ole state of Oregon is looking for input…they’ve spent the last couple years doing everything humanly possible (much of it not remotely ethical) to make sure that everyone with chronic pain goes without effective treatment (tho the acupuncturists on the task farces are sure fighting to make sure acupuncture gets covered… no conflict of interest there. Sure).

That said, anyone ever heard of CRPS not on an extremity? I had to have surgery in 2001 for a tumor on my esophagus & have had an area on my lower left ribcage that fits all the descriptions of CRPS except for the swelling. But everywhere I look for info on CRPS always & only talks about extremities. I’ve tried everything they recommend for it, from Lyrica to gaba to topical lidocaine to …etc etc etc. The only thing that helped at all has been –of course– dem evil opioids that we’re being forced to go without.

Stephen Abbey

I just wonder how people with chronic pain are coping?. How much longer is this going to go on?. How many more suicides are there going to be?. The patients that have been established for years with no problems of over dosing. Why are they having to continue suffering?. Why?, Why?,

Lisa K. Jones

Oh! I didn’t know the date was November 4th. I heard it was December 4th in CA. I think the Governor made it that date. Have to check out this website. Thanks for telling us about it.

Alex Stephens

I think the description of CRPS is minimizing the extent of the affect it has on the patient. I have the condition and have had for nearly 20 years. Without the use of “Medication Cocktails” created and managed by my chronic pain physician I would either be dead or addicted to illegal drugs. The condition is that serious and should not be taken lightly. I also feel that any description of CRPS should include the stages of the disease to further illustrate its affect on the patient. Although not fully recognized there are 3 stages, stage 1 is RSD, stage 2 is when the disease becomes CRPS, and stage 3 leaves a patient wheelchair or bed ridden and is frequently followed by the death of the patient. CRPS itself is not a terminal disease, but because of the level of pain involved patients do end their lives.

There are so many invisible chronic pain diseases that are never spoken of I am referring to Tarlov cyst disease cause unknown it it was discovered buy a neurosurgeon Isidore tarlov during and the autopsy this disease has no cure and causes non stop burning nerve pain yeah no one ever mentions this condition and it has been around since the 1930s I’m hoping just as with CRPS that there will Bill cure someday but it is frustrating for those of us living with Tarlov cyst disease that we seem to be forgotten no one ever talks about this life-changing debilitating Non-Stop horrific pain syndrome maybe someday they will designate a day for those of us that suffer from this debilitating condition thank you for reading