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Welcome to the CRPS/RSD Guestbook!


There are currently 226 messages.

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Message Number: 226 - Wednesday, November 15, 2017 08:22:04 CDT
[IP = 69.42.19.62] -
Name:  Julie
Like to receive our monthly newsletter?:  Yes
Year your RSD began?:  2011
Comments:

Please send your newsletter.

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Message Number: 225 - Tuesday, November 14, 2017 12:55:53 CDT
[IP = 4.28.70.34] -
Name:  Alan LePage
Like to receive our monthly newsletter?:  YES
Year your RSD began?:  2017
Comments:

I was just diagnosed with CRPS in Ocotber, 2017. I did not hav eany specifc eventthat I can point to that initiated this disease. My hand, arm are in constant agony. My employer has now reloeased me. So Im without income and a family to feed.

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Message Number: 224 - Wednesday, November 8, 2017 00:50:47 CDT
[IP = 50.48.86.138] -
Name:  Paul A. Santore, II
Like to receive our monthly newsletter?:  Yes
Year your RSD began?:  1996
Comments:

Diagnosed in May, 1996, after having an accident (1995) on the job (law enforcement officer) that crushed my left hand, broke left knee and suffered a concussion. After approximately a year, despite the numerous breaks in my left hand having healed and having been subjected to over 6 months of very aggressive physical therapy, the hand was much too painful to use. The hand had also turned a purplish black and became enormously swollen. Within 5 year's, I experienced these symptoms throughout my left side, head to toe. Having suffered with this condition and in extreme pain for 20 years, I wouldn't still have such the will to live as I do if it wasn't for my wonderfully loving and supportive family (of 8).

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Message Number: 223 - Private Message

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Message Number: 222 - Wednesday, October 18, 2017 08:56:34 CDT
[IP = 216.246.153.204] -
Name:  Christina Blair
Like to receive our monthly newsletter?:  Yes
Year your RSD began?:  2005 diagnosed 2015
Comments:

I began right arm pain in 1994 from a TFCC tear and tennis elbow. Debridements, elbow surgery and continuing heavy right hand work as office manager keep the pain increasing. Finallly, in 2014, I had left carpel tunnel surgery. During the recovery of that (the easiest surgery I've ever had!) relying on the right hand sent the CRPS out of control. Nerve pain, burning, sharp ice pick pain, bee stings in wrist all led to a surgery on the wrist to wrap the nerve. I worked six months part time trying and trying to get back to full time. It never happened. March 5, 2015 I was pulled from work, never to go back. I was diagnosed with CRPS. It was God's 6 foot tall, neon sign to me....STOP!! Only took 20 years to get the message! I was given SSDI in two months....unheard of in that short time frame. Now, I listen to what the arm tells me. Keep the range of motion going as it allows. Keep my spirits and dry humor in use daily. Some days, only crawling into bed will do. I get Stellate Ganglion blocks about every 6-8 weeks. They give me function and bring down the pain to a more reasonable (is there such a thing with CRPS?) level for about a month before slowing the intense burning, stabbing pain increases to sickening levels again. Retirement (dislike being disabled) suits me as I can say yes when it works and no when I have to behave. This journey is a day by day step. As long as it goes forward, I'm ok with the pain. My coping phrase, "it's only pain".

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Message Number: 221 - Thursday, August 3, 2017 20:17:28 CDT
[IP = 73.136.201.78] -
Name:  Ben Plowman
Like to receive our monthly newsletter?:  no
Year your RSD began?:  1997
Comments:

At age 27 I was just begining a career as an immigration inspector with U.S. immigration. My first posting was in St. Thomas Virgin Islands. Paradise. A tugboat arrived after midnight and my job was to check everyone in to the USA. Getting off I had no light and a concrete dock. My landing wasn't that bad, but 3 days later I awoke feeling as if someone took a sledgehammer to my calf. My search for medical help took me home to Houston, Texas. Months past before someone was able to give me a diagnosis. The doctor gave me a nerve block in my sympathetic nerve. It worked. I really didn't understand the speech the doctor gave me about how my whole life was about to be turned upside down. After a week the pain came back and over the next couple of years it spread up the leg down the other and into my arms. Mutliple surgeries, 2 spinal cord stimulators, even sympathectomy (cutting the nerve) on both legs and still no change. 20 years later I have fought this illness. While my body may be suffering I have not let my spirit be broken. Faith in Jesus and the Love of my family has sustained me. Yes, it is a horrible disease and you have to keep fighting, my words are you must have faith and Love no matter what your situation is.

- Ben Plowman, 47, Houston, Texas

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Message Number: 220 - Private Message

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Message Number: 219 - Wednesday, April 12, 2017 06:32:01 CDT
[IP = 94.0.159.72] -
Name:  Angela Ming
Like to receive our monthly newsletter?:  yes
Year your RSD began?:  1999
Comments:

I had a RTA in 1999 broke my neck, arm, ribs, on breaking my arm the bone severed the nerves, leaving me with RSD in this limb. The first year was horrendous even a draft would cause me pain, I have managed to learn to live with this after numerous medical interventions.

Today 18 years later, I now have it all through my body which I am finding it difficult to live with. I was on 180mg of MST x 3 times a day, Oramorph, Fentinel Patches plus other stupid meds. I had weaned myself off these as I accidently overdosed. I went back on them last year but again I have weaned myself off them. I take no pain meds now as I am too scared of the addiction.

This is a debilitating illness, I detest having it, especially now with it being everywhere. When I sit my skin is sore, when I move my bones ache, My legs and hands are continuosly cold although I myself are warm.

Any help would be greatly appreciated.

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Message Number: 218 - Private Message

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Message Number: 217 - Monday, March 20, 2017 14:28:33 CDT
[IP = 104.171.208.72] -
Name:  Rebecca Schlueter
Like to receive our monthly newsletter?:  yes
Year your RSD began?:  2014, my husband not me.
Comments:

My husbands RSD started 2/2014. He went from being active/healthy barge worker, hard manual labor. To now almost completely wheelchair/bedbound. I am trying to research any treatment options that might at least get his chronic pain under control. We are in middle TN and there is very limited options. Vanderbilt can not even help.

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