Friday, September 12, 2008

RSD / CRPS

One week ago, I did not know what RSD or CRPS stood for. I now have read everthing I can find on the internet. My husband was diagnosed with this last Friday. It has changed our lives. RSD or CRPS is "a chronic pain condition that is believed to be the result of dysfunction in the central or peripheral nervous systems." This is a disease that will always affect him.

Complex Regional Pain Syndrome (CRPS), also known as Reflex Sympathetic Dystrophy, is a chronic neurological syndrome characterized by:
severe burning pain
pathological changes in bone and skin
excessive sweating
tissue swelling
extreme sensitivity to touch.

It is estimated that between 500,000 and 750,000 people have RSD.

Today, we were at Loyola trying to adjust medications. He has had 2 nerve blocks in the past week. Another nerve block is scheduled for Tuesday. It has progressed to Stage 2 and pain control is a challenge.


We will be married 20 years in March and have faced every challenge that has been thrown at us and we will overcome this also.


Waddling to kick some RSD butt................

9 comments:

Coach Marla said...

Hi,
I can remember back when I was first diagnosed with RSD back in 2003. It was so scary and I too read everything I could find online about it, and wound up scaring myself silly!! I have now learned how to control the pain that comes with RSD, and it's a good thing I did because in 2006 I was diagnosed with Full Body RSD, Fibromyalgia, Osteoporosis, and MS. And the pain of all can sometimes be overwhelming, so learning control when I did had allowed a great advantage for me.
In 2007 I became the first known RSD Coach(tm) and have been helping many learn the same methods of control. So if you or your husband need someone to help you understand what is going on with your body, life, mind, spirit, etc., please look me up. My website is http://www.rsdcoach.com and I do a weekly radio show on Tuesday's about varies different types of chronic pain issues. You can listen in at http://www.rsdcoachlive.com .
I will keep you both in my prayers and wish you all the best God can give.

~Take care of YOU!!~
God Bless,
Coach Marla

Christine said...

Congratulations on almost 20 years. My goodness that is a feat not reached too often nowadays.

I too have RSD/CRPS. I have had mine now since 12/2006 after an accident. I went from healthy to bedridden in 9 months. I was fitted with a Spinal Cord Stimulator August 2007, and it has helped quite a bit. (I have more in my blog about it if you'd like: http://blog.christineleiendecker.com)

You will find MANY people in the world who are afflicted with this horrible condition.

I tell people that basically my nerves turned on after an accident and never turned back off.

If possible, your husband could benefit from the following therapies and doctors: Pain Management (very important), Primary Doctor, Neurologist; Aggressive treatments with: Water Therapy, Physical Therapy, Acupuncture, Chiropractic, Psychologist/Psychiatrist.

It sounds like a lot, but if he remembers and can get help keeping his muscles strong and keep moving, it can be controllable, or at least more bearable.

You will be tested and put to your limits. Please be strong. There are many people out there who are faced with the same situation that you are faced with at this moment. He will get cranky, he will get mad, he will get pissy, he will get depressed. Be there for him. Realize that he is not mad, angry, or depressed because of you. The pain makes us this way. The medications make us this way. His mind/clear thinking/memory will be stretched thin. The pain causes us not to be able to think clearly all the time, the medications make us lost/confused at times, and the RSD/CRPS just strictly messes with memory.

Hugs. Find a support group. Keep in contact with someone. You don't want to do this alone. He is blessed to have you and you to have him.

Another site you can visit is www.RSDHope.org - they have a letter to family and friends that helps describe what is going on with your husband.

Christine
http://AfflictedWithRSD.com
http://blog.christineleiendecker.com

Vickie said...

Good luck with that. It can't be easy for either of you and will present challenges in the future.

Fe-lady said...

So sorry to hear about your husband's illness.
My thoughts are with you both as you battle to understand and fight this disease.

On another note...congratulations for being together for 20 years. That is something to be proud of!

Lisa Slow-n-Steady said...

20 years of marriage is an awesome achievement. He's blessed to have you by his side through this. I wish you both the best. *hugs*

Joe said...

Oh my!! This is significant. Wow.

You are doing the right things... and finding support through this will also be key.

My prayers for you and your husband as you learn this new thing. 20 years is a wonderful gift to each other...now you will give even more.

rocketpants said...

I am so sorry to hear about your husband's diagnosis. You will battle it together and learn to kick it's butt.

J~Mom said...

Thinking of you!!!

Sunshine said...

Oh so very sorry for your news!!

I have not heard of RSD, although I was diagnosed with fibromyalgia about a dozen years ago.
It is so amazing to find out you have a disease or condition that you had not even heard of.
Very best wishes to you both on this journey.

My husband has blood cancer (multiple myeloma). Yes, it changed our lives.

Along with the challenges, may you have many blessings.. and keep running!

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