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.

Sacramento Balloon Release Fundraising Event for the POPF

As the Event Coordinator and California Ambassador for the Power of Pain Foundation (POPF) I would like to invite you to Help raise awareness in a balloon release fundraiser project this summer in Sacramento California for Reflex Sympathetic Dystrophy Syndrome (RSD) aka Complex Regional Pain Syndrome (CRPS) and Chronic Pain issues. Each balloon/balloon bunch will have a 4 sided tag attached. The tag will include your name/business name and short message, POPF Info, and RSD Info.

Saturday, July 21, 2012  – 11:00 a.m. until 3:00 p.m.

Location- To be announced

Pricing is:

$2-1 balloon

$5-3 balloons

$8-5 balloons

$16-10 balloons

Pre-order Balloons at http://powerofpain.org/fundraising, be sure to include your name and short message in the comment section when completing your order. Names will also be posted on our website!

You do not have to be present in Sacramento California to participate. We will release your balloon or balloon bundles for you.

All purchases are tax deductible. The Power of Pain Foundation is a non profit 501(C)(3) Charity.

Not only will this help our cause, but will also give you advertising opportunities whether as a business, organization, foundation or individual. Your name, business name etc will be included on the tag released into the air.

Whoever finds it will not only learn about our us but you also.

For more information and to watch for updates including upcoming location Please visit and check back regularly at Public Event by Twinkle VanFleet and Barby Ingle at https://www.facebook.com/events/314514498596759/

Please help us and join our cause! We’re helping to raise continued awareness for Reflex Sympathetic Dystrophy, Complex Regional Pain Syndrome/Causalgia, Post Cancer Pain, and Diabetic Neuropathy.

We’re supporting the Power of Pain Foundation (POPF) in their ongoing efforts to assist patients and caregivers dealing with these and other life altering Neuropathies. Beneficiaries include patients who are economically and socially affected by these invisible diseases.

Reflex Sympathetic Dystrophy, Complex Regional Pain Syndrome/Causalgia that effects over 10,000,000 people in the United States alone. It is also an auto-immune disorder.

RSD/CRPS is a painful, progressive and often debilitating, neurological disorder that affects the network of nerves along the spinal cord. The Sympatheic Nervous System is commonly known as “Fight or Flight”. The left side of our brain contains the Para Sympathetic, the calm side and the right contains the Sympathetic. Imagine a frightful event, a tiger enters the room. The fight or flight response is our basic human instinct of survival. Fight the animal off, and face the serious consequences (fight) or get the heck out of there (flight aka fly away).

Image that a car alarm has been activated. You’re not sure why it was barely touched. It continues on with the loud noise. You finally realize that nothing you do is stopping it. Sensitivity may have triggered it but in any event it never shuts off. In this analogy there is no solution to shutting the alarm down. None!

Of course the option would have been to either cut the wires to cease the noise or to somehow dismantle or uninstall the system causing it. The alarm is the non stop seemingly never ending pain that a RSD/CRPS patient feels constantly.

There is no cure to date!   Hope to see you there!

If  you have RSD/CRPS and are interested in possibly working this event with me or can help in anyway please email me at twinklevanfleet@crpsadvisory.com

RSD(S)-CRPS Advisory Info & Support Group

CRPS Advisory LogoSupport Groups are necessary for those who need understanding and comfort when dealing with chronic illnesses other’s don’t understand. We offer one you can feel at home in.

RSD(S)-CRPS Advisory Info & Support Group

Years ago I had an RSD Support Group at MySpace. At the time it was one of the largest support group for RSD/CRPS there. As MySpace went through its changes and removing some features, I went to work as a volunteer Support Leader for MD Junction at the Reflex Sympathetic Dystrophy Support Forum. I’ve been a Leader there since 2009 and second to the top in seniority.

Since I lost my group at MySpace, I waited to create another of my own until I felt confident with the venue I would decide to hold it at. Since millions of people are on Facebook for various reasons I chose to create it there since there are several options available and a very large and spread out community of pain patients.

Less than a year ago I created the RSD(S)-CRPS Advisory Info & Support Group. I was slow on the start up since within a week of creating it, I ended up in a severe and long lasting flare up. The Group is doing well and growing at a steady pace.

This time I am not running solo. In the past I’ve been an advocate and spokesperson for RSD/CRPS, promoting, advertising, endless hours of research, writing essays and articles, sharing accurate information, staying updated, maintaining my website etc the best that I could. All by myself. It’s really hard. At least for me these last couple of years. I’m in my 11th year of CRPS. My energy is minimal.

Now I have someone to work with me. And currently we’re both working on fundraising and awareness projects for the Power of Pain Foundation as a team and in conjunction with our group. My Co Administrator Wanda will be raising awareness via 2 Expo’s and I’ll be doing so by holding a balloon release project.

We’re also supporting the POPF via Causes. Our page is called “Help the Power of Pain Foundation Assist Those with RSD/CRPS & Other Neuropathic Pain Conditions

Our group is devoted to the support and guidance of RSD/CRPS patients, family and friends of.

Our mission is to teach and be taught…

                                                   …It’s our hope to educate and learn.

We’re a family oriented group. Caring and compassionate. Stop by and take a peek. We would love to have you join us and become part of our online family.

We have a Wonderful Co Administrator (Wanda) and Great Group Leader’s. Our discussions include pain management, the pain we endure on a daily basis, medications, alternative methods of pain control, the use of vitamins and supplements, depression, biofeedback, cognitive beliefs, coping strategies, flare up protocols, clinical trials, various therapies and techniques, meditation, yoga, the use of distraction and modalities, physical therapy, each other and so much more.

We also allow you to share other RSD/CRPS related information sites, books, videos, including your own website, blog, foundation, organization, or media pages. This is for the purpose of spreading further awareness and information around the web and hopefully off also.

All we ask is that you don’t spam us.

We would also be thankful if you shared us with others as well.

RSD(S)-CRPS Advisory Banner

Click on our banner above to go to our website

Hope to meet you in our Support Group!

Wishing you pain eased days and nights,

~Twinkle