Living with RSD

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Yes, RSD can be fatal
by: Mary Jane on Tue, Mar 10 2009

My husband suffered from RSD/CRPS for 8 yrs. Started in his right foot, eventually encompassing his entire body. When that wasn’t enough, CRPS started attacking his internal organs. 18 hospital stays for excrutiating pain in his stomach. All tests were negative. Large doses of dolodin would relieve the symptoms. A ladocaine infusion in 2005 finally ended these episodes.

In Sept. 2006 the RSD attacked his lungs. All nerves on his lungs were inflamed and he spent 3 weeks in a coma. Recovered from that, but the RSD attacked his heart while he was sleeping in June 2007 - and he died in his sleep. The autopsy showed his heart had swelled to twice it’s normal size (tests conducted after his coma showed his heart was normal size just 7 months before). I can’t tell you how many doctors had told us “no one has ever died from this disease.” I don’t want to alarm everyone - living with RSD is scary enough - but I think everyone should know that in extreme cases, it can be fatal. When he was hospitalized in the coma - I kept asking if this could have been caused by the RSD - and all doctors said “no”. They weren’t even considering RSD as a cause. Although afterwards, they agreed it had to have been from the RSD as the multitude of tests never showed any other conditions. It is important that if hospitalized for internal pain - you insist that they explore the possibility that this was caused by the RSD.

Since then, I have met other RSD patients who have been similarily affected. Unfortunately, this disease is so mis-understood. I highly recommend the ladocaine infusion. It certainly calmed everything down for a period of time. In hindsight - we should have had additional infusions at various intervals. I don’t want to overly alarm everyone, only a very small percentage of people with CRPS have it attack their internal organs. But I also believe knowledge is power, so I felt compelled to let people know in the event they find themselves in this awful position. God Bless to you all. Hang in there. There are some wonderful doctors and organizations fighting for the cure.

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Comments

Fri, Apr 03 2009
We never put it together either. My husband saw every specialist under the sun, and none of them were aware that RSD could cause this. It wasn't unt...Read
Fri, Apr 03 2009
I cannot believe what I am reading as I went through this last year two times!!! It took several doses of a cocktail mix to relieve the inflamation o...Read
Sun, Mar 15 2009
Thank you for your response. I was not at all surprised to hear that your husband did mention the electric shocks shooting through his body, because I...Read
Sun, Mar 15 2009
Dear Truth Seaker, yes my husband often spoke about the feeling of electrical shocks shooting through his body. After reading your posts, I would sug...Read
Wed, Mar 11 2009
Finally someone who speaks the truth and who has a greater understanding of the hidden dangers of this disease. I suffered a right foot injury in 1996...Read

March 2009

Still Wondering - by Toni-Lynn - (Mon, Mar 30 2009)
Hi, I am Toni, a 28 year old female. I have been going back and forth to several doctors about my condition and no one has any answers for me. I wanted to share with the users of this site my symptoms because after researching RSD I really feel this is what I am suffering with. [more..]
NOT DIAGNOSD YET - by ROBIN - (Mon, Mar 30 2009)
I haven’t been diagnosed with rsd yet, but I am pretty sure that is what I have. [more..]
My New Life with RSD - by Dana - (Thu, Mar 26 2009)
I became a widow at 48 and I have 3 sons 2 are autistic. [more..]
Living with RSD - by TAK - (Wed, Mar 25 2009)
I have had RSD for the past 15 years. [more..]
melisA - by MA - (Wed, Mar 25 2009)
I have been mis diagnosed now for over a year and the finally have said that I RSD. [more..]
The Evil Disease - by Clara - (Wed, Mar 25 2009)
My name is, Clara White, I have had RSD since 2006. I have done the nerve blocks until they no longer help, now my pain management Dr. wants me to have a spinal cord stimulator implant. [more..]
RSD - by Lou Anne - (Wed, Mar 25 2009)
I feel as though I have found a pot of gold at the end of a rainbow. [more..]
Spreading RSD - by Robin - (Tue, Mar 24 2009)
Does it ever stop! I am a nurse and was working in a nursing home and of course short staffed. I was helping with rounds at night and lifted a patient back into a wheelchair to prevent a fall. I felt a pain in my shoulder and after three surgeries later developed RSD that took over my right arm. [more..]
Hello I have total rsd - by Debbie - (Thu, Mar 19 2009)
I have went through 29 doctors before i was blssed with a rsd doctor. [more..]
Having babies while having RSD - by Marlador - (Thu, Mar 19 2009)
I had not been dianosed with RSD at the time but finding out later that I have had it. [more..]
A MINOR SURGERY - by wendy - (Thu, Mar 19 2009)
I had alot of discomfort in my right foot,it felt like i had a rock in my foot.I went to a foot doctor and to make a long story short he said i had a small tumor in between my toes.I had the surgery and found out by his own words that he misdiagnosed. [more..]
RSD has overturned my life - by angelicrose - (Wed, Mar 11 2009)
Hello I’m Angelicrose. I’m going to be 32 on Fri. I was disabled 2 1/2 years ago from a work injury. I had slipped on water. Comp had told me it was a simple sprain! I had gotten so bad that I couldn’t walk. [more..]
These Seven Years - by Lee-Lee - (Tue, Mar 10 2009)
Hey. I’m just like you- trying to make the best of these hard times, and trying to have a good life- Except that I have RSD. [more..]
Yes, RSD can be fatal - by Mary Jane - (Tue, Mar 10 2009)
My husband suffered from RSD/CRPS for 8 yrs. [more..]
rsd - by sr - (Mon, Mar 09 2009)
i have had rsd over 10 yrs many people don’t understand the pain that comes with this disorder. [more..]
freezing legs - by L. W. - (Fri, Mar 06 2009)
I had surgery 2 yrs. Ago. Vein surgery the kind with the new laser technique. [more..]
Living with facial RSD - by DB - (Fri, Mar 06 2009)
I too have facial RSD. My came about after nose surgery. I broke my nose in two places and required surgery. After surgery, my forehead was extremely swollen and I could not move my right eyebrow. I was in excruciating pain for years. [more..]
My daughter has RSD - by Drew Anne's Mom - (Thu, Mar 05 2009)
Hi, my daughter has RSD. [more..]
12 years of living with awful pain - RSD - by Sandi S. - (Wed, Mar 04 2009)
It was a normal day like any other day. I was canning tomatoes and ran out of lids and got in the car to go to the grocery store just 5 blocks away and while sitting at the stop light with the grocery store the very next turn I was hit in the back - hard - by a drunk driver. [more..]
Diagnosed with RSD - by Leona W. - (Wed, Mar 04 2009)
I wrote before( Do I have RSD?) but forgot my user name and cannot get back on.I was diagnosed with RSD today, had a Bone Scan. Now the pain and stiffness is going up into my arm! [more..]
My Walk Through Icy Hell - by Misty - (Tue, Mar 03 2009)
March 2006… That is when my life changed … slowly turning into my own Icy Hell! [more..]
springdaisy - by kelly - (Mon, Mar 02 2009)
I was diagnosised with rsd one year ago some days seem good then the burning pain starts and I have days of misery. [more..]
Not myself anymore - by Ss - (Mon, Mar 02 2009)
I stumbled across this site while researching this “condition” that I have. As was stated in a previous posting, not really a group that anyone WANTS to belong to but you all sound so nice! [more..]

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