Surviving the Fire

One of the hardest parts of living with CRPS is the not knowing. Not knowing when the fire will ease down, or the icy cold to run warm. Not knowing when the ache will settle or quality sleep will come. Not knowing if you’ll doze off, even when everyone else thinks you’re still awake because you appear to be. Not knowing why you’re being sent to a new doctor, or how the bills will get paid. Not knowing how to support your spouse the way you use to because you can’t work anymore.

Feelings of inadequacies and worthlessness often override feelings of joy and hopefulness.

Yet you still smile…  try to make other’s laugh, you laugh yourself.

The title of this blog is just about right for this post. When chronic pain and depression collide we’re left with pain and despair crashing into one another. And a vicious cycle that if we don’t pull ourselves out of either by self or with help will just keep bouncing back and forth. There’s nowhere to go. Chronic pain often causes depression and in turn the depression causes even more pain. Stress will just exasperate the two. What might come of all this? A horrible Flare-up. What can we do? We have to break the cycle. Intervene!

My RSD CRPS fire burns steadily, when I have a Flare-up it becomes a raging inferno, so hot, like a steam burn. There have been times this fire has become visible to the eye. My skin has appeared to burn from the inside out leaving discoloration that very much looks like steam or hot water burns. My bones ache so deeply they are screaming.

An excerpt of an article/essay I first wrote in 2009 (Flare-ups and Flare up Protocol)

“I’ve learned to help myself during these times. Duration, frequency and intensity is something that I have to take control of. We all have to. We truly have to. The tools I use during these times are called my “Flare-up Protocol”. My flare up protocol includes the 3, 20’s.

The 3, 20’s are:

Exercise (ie, Yoga, stretching, walking, if able, light weights, activity, etc)

Modalities (ie, anything that can be placed on the body for pain relief, such as a tens, heat, hands, etc)

Distraction (ie, Memory master system, games, meditation, relaxation, fun, etc.

These can also be considered coping strategies.

My favorite is laughing.

The 3, 20’s mean 20 minutes of exercise, 20 minutes using modalities and 20 minutes of distraction.

These should be done whether or not one is experiencing a flare, but especially during. And up to 3 times a day.

While it’s easier said than done, the worse thing to do for a flare-up is to do nothing at all. Bringing us back to the use it or lose it theory which is quite accurate. Doing nothing can cripple us just as much as the pain itself.

I imagine a few of you might be thinking “You’ve got to be kidding me?! You want me to exercise when I’m hurting this bad? You must not understand” Oh but I do, I’ve said it and thought it a hundred times over myself.

While some will not want to take this to heart, we have to take responsibility for our own pain, everyone has to learn to and implement their own Flare-up protocols to get through these extra overwhelming, overbearing, debilitating flares.

As people we expect our doctors to take our pain away and we become discouraged when there aren’t any answers to satisfy our questions. We become depressed and insecure, yet We have to remember that RSD/CRPS is an incurable illness. Classified incurable because there isn’t a cure to it. There really isn’t anything the doctors can do to fix it. If the injury is correctable, it probably isn’t RSD. Our health care professionals can help us with medications and procedures, and that’s it really… just help us along.

We’re usually directed to pain management when our other doctors are at a loss. Pain management is just that, management. Again, not a cure. An area of practice that helps us manage our pain, not make it disappear. They are intended to help us live some sort of fulfilling life when nothing else can be done. Pain management is usually a last resort and the rest is up to us.

We might not like it but we have to take primary responsibility for managing our own pain because there isn’t enough knowledge or medical and scientific certainties out there to do it for us.

Flare ups are apart of having RSD/CRPS or a chronic pain condition. They’ll never go away, we have to learn to accept this. But, with practice, we can better learn to control them.”

http://crpsadvisory.com/rsdcrps_flareups_and_flareup_protocol.html

There have been many times I have used muscle relaxation, progressive muscle relaxation in place for exercise laying down.  I do simple Yoga stretches. My right calf has had atrophy for 11 years now and continues to worsen. It’s important to help our bodies not waste away. My exercise is also listening to music and moving my body to it the best that I can even while sitting upon my bed.

So how do you survive it? Relax! Try removing worry from your life. Again easier said than done. I know, I continue to struggle with the same issues. The not knowing, the unknown. What will tomorrow bring. For one thing it’s best not to tell ourselves tomorrow will be an awful day. Why? How do we know yet? Tomorrow isn’t here. Positive self talk is helpful. I should practice more of what I preach. Learn how to get Freedom from Pain and Discover Your Body’s Power to Overcome Physical Pain.

I use my imaginary baskets. In my mind I have 3 baskets. 1 for important things, tasks, people, places,  issues, etc, 1 for the moderate and 1 for it can wait a bit.

Everything is important to me. So this is difficult. I care so much about people. I often times care too much which causes me to carry much on my shoulders. I don’t know any other way to be. I serve, I give, I care and I love to.

I have to decide what is most important to put into the important basket. I need to learn to put more in the 3rd basket. By putting everything into my first basket I get behind, my moderate basket rarely has enough in it. I end up in a crash and burn. If it’s used right it really can work. Even with kids.

When we’re happy, everyone around us is happy. We all know that saying.

Deep breathing is helpful, meditation, relaxation, guided imagery, progressive muscle relaxation, distraction, modalities, I’ll leave out exercise 🙂 , support groups, not carrying the world on your shoulders alone, aroma therapy, bubble baths and soothing music, practicing appreciation, being thankful.

I’ve been scheduled to see a Pulmonary Specialist based on my sleep study results. No one has given me any specifics…  “not knowing”. I admit I’m nervous as I don’t know why. All I was told is that it didn’t seem to show Sleep Apnea which I was tested for.

I do know one thing, regardless of how hard it all is..

I am, so far,  surviving the fire…

 

Surviving the Fire by rsdcrpsfire

and I  hope you are too!

Advertisements

RSDCRPSAdvisory Support Group Opens It’s Doors to All Chronic Pain Sufferer’s

Our Group originated to help inform, guide and support those diagnosed with Reflex Sympathetic Dystrophy Syndrome aka Complex Regional Pain Syndrome/Causalgia. For the families and friends of. Nearly everyone with RSD/CRPS will also have Fibromyalgia, although not everyone with Fibromyalgia will have ever have RSD/CRPS. RSD/CRPS is a Neuropathic pain Condition, Fibromyalgia isn’t. Fibromyalgia is still very painful (I know, I have it, too)

We are now expanding our group to offer the same support to all those struggling with Chronic Pain. If you are struggling with a chronic pain condtion of any kind or know someone who is, please let them know about us. We look forward to meeting you

We are a caring, loving, compassionate and understanding group of people who have been through a lot, yet we are not our without faults. We’ve not only endured pain, but surgeries, multiple diagnosis’, dealt with depression, anxiety, fatigue, insomnia. We’ve been mis understood, put down, been called drug seeker’s, addicts and more. Many of us have been alienated from family and friends.

https://www.facebook.com/groups/RSDCRPSAdvisory.InfoSupport/

A support system is necessary to achieve the best possible chance at a quality of life.

Our atmosphere is often playful, laughing and fun loving. Laughter is the best medicine and distraction ever! We will cry together, encourage one another, lift each other up when we fall. If you have an issue with another, please don’t hold malice in your heart… let it go. The stress and the tensing of your muscles will only cause you more pain. Breathe in, breathe out.

People sometimes have bad days, say things they don’t mean, say things they perhaps do mean, but pain often speaks louder than words themselves. Words can be let go, pain cannot be.  

Chronic pain regardless of what the condition, disease or illness is..  is still pain. Neuropathic pain, Neuralgia, Fibromyalgia, Post Cancer Pain, Diabetic Neuropathy it’s all painful.

We want you to have an at ease, calm and peaceful experience.

This Group was created for you the people since it’s birth.

We welcome you, please join us!

Disclaimer: The information contained in the RSD CRPS Info & Support Group is meant to be accurate yet is not intended to replace official sources. Information contained herein should not be considered error-free and should not be used as the exclusive basis for decision-making. Use of our Websites and Group information is strictly voluntary and at the user’s sole risk. Other resources linked from these pages are maintained by independent providers. We do not monitor all linked resources and cannot guarantee their accuracy. We’re a community of patients, family or friends of. We’re not doctors, specialists, or lawyers.

We take threats and discussion of suicide very seriously. If we learn that you are emotionally unstable, even if the cause is chronic pain, we will intervene on your behalf by either notifying family members or calling your local police department. If we learn from your own words, Facebook posts, or from another that you are going to overdose on medications, or harm yourself in any way that could lead to the loss of your life, we will not turn away. This is not meant to interfere in your personal life, but instead to save your life. If you agree to join our support group, you agree to these terms and conditions. You’re not alone!

Need help?
In the U.S., call 1-800-273-8255 National Suicide Prevention Lifeline

Wishing you pain eased days and nights,

~Twinkle VanFleet Administration  www.CRPSAdvisory.com

twinkle@crpsadvisory.com

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

Welcome to RSD Advisory

Welcome to rsdadvisory.wordpress.com sister to rsdadvisor.com. Your RSD(S)/CRPS helping hand.