11/11/2009

NATIONAL RSD/CRPS MONTH

Some of you have often wondered just what it is that I have. Since this is National RSD Month, I thought I would explain it in full.   Reflex sympathetic dystrophy or CRPS  complex regional pain syndrome is a chronic neurologic condition where your automatic nervous system runs amok for whatever reason.  Nerves misfire and constantly send the wrong messages to your brain.


Scientists/Drs still do not know what actually triggers it and there is no cure.  Up to 6 million people in the US alone suffer from this.

It causes unrelenting severe pain, burning, tissue swelling, joint immobility, muscle spasms, paresthesia (numbness), sleep disorder and depression from the never ending pain,  One can also have bone changes like osteoporisis in the affected area. Many complain of mental changes like memory and difficulty getting a word to the tongue from the brain. This latter one upsets me the most.  I can be talking and a simple word like many or a personal name  is in my brain and i can see it but for some reason it will NOT come to my tongue so I can speak it.

It has been related to traumatic injuries, following surgery, infection and sometimes there is no incident found to have been the cause.

Mine started after a devastating knee injury when I was working in the hospital.  Six long years and 35 physicians later I have RSD/CRPS and am a survivor. Early diagnosis and treatment is the key to a possible remission or prevent of spread.  I was not so lucky as mine wasn't diagnosed for almost a year and a half.

Parts of my life as I once lived it are no longer.  Through the grace of God and a few great drs I am doing okay.
My family is the center of my life and that has not changed.  I thank God for them and a few very special friends for keeping me focused and always watching my back.

Blogging helps me keep focused on the positives and keep moving forward.  The friends I have made from
this blog help me to remember the goodness that comes in small ways every day.

I thank every one of you who are there in my life and who openly share the ups and downs in theirs as well.
We are all here to meet people and socialize in different ways but the underlying theme is about sharing...ideas.....art....family...culture.....faith.....health.....illness......joys....hardships.

Isn't it just amazing and truly wonderful?


this video spot is put out by the austrailian support group for rsd but it explains how our lives are affected every moment of the day.  I wanted to share it with you for a basic explanation of what RSD is.
I also ask that if you know of ANYONE enduring a chronic illness or in chronic pain that you pray for them and their families.  You might even do a small generosity that will reach far beyond its measure.

10 comments:

Paula said...

Catie,
This is a wonderful post, really explaining your condition well. I had never heard of RDS until you, and have looked it up a little bit, but nothing compares to hearing it from someone whose life has been changed by the disease. I'm so sorry that this has happened to you and am amazed at your strength and perserverance.
My daughter, Shilo, is 19 and has had health issues and chronic pain for about 5 years now. She was just recently diagnosed with Fibromyalgia, which seems to work the opposite of RDS. The pain center in her brain is on overload and constantly sending signals to her nerve's and muscles that they are in pain, so even though there is no actual physical cause, the pain is very real. It also causes fatigue, depression, irritable bowl, memory issues, etc. We are still in the learning process and trying to get others around her to understand. You can't see it, so it must not be real.

Gypsy Mermaid said...

Omg hun I had nooo idea! I just found your blog sit again. My links were all gone for some reason. I hope that God grants you peace and wellness. I cant imagine all the things that video said that is horrible nad no one should have to live with that. If you need anything ever let me know BIG BIG HUGS

toodles-
Sarah

bluemuf said...

Hi Catie

I found this post very interesting and informative. I have given me a greater understanding of the illness.
thank you dear friend for sharing.

Hugs Karen

Sassafras and LuLu said...

Hello Catie Ann,
Thanks for visiting me, I don't get to visit much these days...so busy, just wanted to send blessings your way and a hug!!
Carol

Alison Gibbs said...

Catieann, I think the video says it all. Imagine - those of us that don't suffer from it can only imagine the trauma of such a condition.
Thanks for sharing this with us.
Alison

bountifulacres said...

CatieAnn-
Thank you for making me aware of this horrific condition. My mom had MS for 16 yrs and I remember the days her muscles would react without her control and the look on her face. I will be praying for you and yours. God is the God of peace and I pray that He covers you with His wings of peace. He is able to do more then we are able to think or imagine..so I'm also praying for your complete recovery. Love- sue(BountifulAcres.typepad.com)

The Rose Room said...

just horrific Catie....... what a terrible condition to have. Makes you even more incredible! Blessings - Rachaelxo

Sugar Bear said...

Catiean - I cannot imagine the pain you must be in. I had heard of this but never knew the exact origins. I have a chronic illness as well and though I have been blessed to have it under pretty good control with medication there were days that was not always the case and I can certainly relate to a lot of what you are going through.
Hugs,
Karla

Sugar Bear said...

I was typing too fast and left out the second n in your name! Duh! I apologize, I hate when people misspell my name!
Karla

Ele at abitofpinkheaven said...

Thank you for sharing this with blogland. My thoughts and prayers are with you in this journey of life.