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

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!

Learning Glia

There’s been a lot of discussion lately about Glia, Micro Glia, Glial Cells and Glia Cell Activation. It’s been noted that these cells play a role in RSD/CRPS.

The Living with HOPE Radio Show http://www.blogtalkradio.com/thebodymindandspiritnetwork with Host Trudy Thomas ran a weekly live feature on the topic titled “Glia, what is it?” with Guest Chris Greulich Writer and Editor of the Patient Awareness Blog http://www.patientawareness.org hosted by the Power of Pain Foundation.

The episodes are now in the shows archives for listening to either directly from the site for by downloading.

I myself find this fascinating and continue to learn all that I can. I encourage each of you to research what you can too. Some key words are listed above, you can also add RSD/CRPS to it. Other articles are located in my pages section and there will be more to come. We all need to take an active role in our own illness, read, research, talk with others who understand, listen and learn.

Remove all to as many possible stresses and triggers from your lives as these only cause the pain to escalate with Flare-Ups. Practice calm and appreciation.

From what we’ve learned so far the closest thing to deactivating the glia cell activation is Ketamine. Low dose Naltraxone is working to minimize the pain of some of those who’ve had the opportunity to try it, but not to the point of remission that Ketamine offers many.

I myself am no longer taking Morphine, or any of the Vicodin family, but instead Suboxone. I take it as my main pain reducer not to fight addiction.

I could return to one of the others, but I choose not to. As long as the Suboxone continues to work well enough, I’ll remain on it. I got to the point that my other pain relievers failed to ease me or take the edge off.

Many suffer from Opioid Induced Hyperalgesia and don’t even realize it. Yet are fearful to wean off their medications to find out. Trust me, I would be scared too, but sometimes we have to take that hard step forward even if it’s no longer literal to find out what’s best for us.

Time to learn much more about Glia and what else shuts down it’s activation.

I pray that if a cure doesn’t make it to us in my lifetime it will for certain in my children’s for who knows how many more million will be affected by then.

Nervous System with Glia

 

Nervous tissue consists of neurons, which are the cells that conduct signals, and supporting neuroglial cells such as microglial cells, astrocytes and oligodendrocytes.

Nerve – Bundle of nerve fibers outside the central nervous system.

Neuron – Nerve cell that characteristically has three parts: dendrites, cell body, and axon.

Neuroglial Cell – One of several types of cells found in nervous tissue that supports, protects, and nourishes neurons.