Hi,

My heart goes out to each and everyone of you.

You need to find out WHY you have RSD. RESEARCH

I seriously felt no less than a SCIENCE PROJECT

Don't give up.

Love, Roz

My PM Doctor feels that mine originated due to the disaster that my back was in for sooooo many years.............he determined that after I had major back surgery in 11/05. I was not surprised at all when he told me that. Because I could not remember any close precipitating injury to my feet when they both went into the burn at the same time.

Deb

I know how I got RSD

A botched angiogram where they accidently blocked the femoral artery. One week later the leg was feeling mighty bad, and that is when they did surgery to remove the blockage, and hopefully save the leg (which they did).

Been havin pain ever since.

I do agree that people should try and find out how they acquired this insidious disease. Although, when you study how people acquire RSD you find many places where it could be from something as simple as a stubbed toe, or sometimes there is no known cause.

It seems most cases will have some event like surgery being the culprit.

Hi Roz,

I completely understand your advice and concern for your friends here on this sight, especially given your personal experience. There is an RSD doctor out east (Dr. Robert Schwartz from South Carolina I believe) who shares your thinking that there is often a hidden infection involved with RSD.

My daughter's first experience with "amplified" pain followed a staph infection in her throat. She had been away at a weekend horseback riding camp and returned home with this infection. It has always concerned me that the horse she rode and took care of that entire weekend died two days later. For many months she continued to have severe pain even though throat cultures came back normal.

**Also of concern ... prior to that, she had been bitten by something at another camp. When she returned home, she had a bite the size of a dinner plate on her leg. We took her to the emergency room where she was treated for cellulitis.

It was a year after the staph infection in her throat that she sprained her ankle and was diagnosed with RSD. I am so concerned that there may be an underlying infection that perpetuates her RSD, but when I read the symptoms of Lymes, many do not apply. I questions if it is somewhat like RSD where different individuals have different symptoms?

She has since had more than her share of staph infections, but when I took her to an infectious disease doctor, he said that once a person has one, they are more susceptible to getting others. He pretty much just blew me off.

Do you have any suggestions on how to find a "Lyme Literate" doctor in our area?

Thanks,
Jeanne

What everyone is really saying is HOW they TRIGGERED their RSD, not WHY they were prone to DEVELOP it in the first place. In my opinion, with all that I have read and researched over the past 15 years, it seems that the vast majority of RSD sufferers have some sort of other issue going on which makes their bodies susceptible to the horrors of this disease - some sort of underlying (if even undiagnosed) auto-immune disease, prior genetic abnormality in the neuropathic area such as with my son (God help him he doesn't end up like his Mom) like Charcot-Marie Tooth (part of the family of muscular dystrophy), or possibly even early childhood enviromental factors which can alter brain chemistry such that the CNS is re-wired and at risk for this type of disease (as some of the recent studies imply that neuro-plasticity can be altered and then later, re-altered through things like mirror therapy). Now that everyone here actually has the disease, I'm scared that the question doesn't help us, just the future generations, like my son, who may benefit from knowing how to look out for and avoid some of the causes, or even prevent development of the pre-disposition further. I'd like to be optimistic but I am often found lacking in that department as the medical community as a whole glosses through life and letting the individuals slip away while they help what they view as the majority (with their sniffles and colds which are much easier to treat and for which the MD's feel much better about themselves for treating.)

Hi Everyone,

I hardly know anyone here anymore, my the grace of GOD I am getting well.

I am not thin skined, nor pusher either.


Much Love, Roz xoxo

I will do some research on this thanks Roz and Bigbug for explaining further..
I know that my sister has lupus, my mom has diabetes and high blood pressure.. my daughter has alot of food allergies and excema.. my son has CP and autism (though he was premature)and now I have this.. and I have previously felt my pain has lasted way longer than it should.

Thanks!

My daughter is 15 years old and she has been diagnosed with RSD or CRPS. She has been to the Cleveland Clinic Childrens Hospital, Pain Rehabilitation Program, it is a three week program, two weeks in hospital stay and one week outpatient. While I was there I spent many hours with other mothers that had their children hospitalized with RSD. We tried to find a commonality between our children. Some of them had Positive ANA's, they also had mononucleosis, and ended up with high Epstein Barr Titers. Several had POTS, (low blood pressure with syncope and Tachycardia,) Most of them had these illnesses in the past or were being treated for them. My daughter also had a tick bite when she was a toddler. Her Lyme was negative the last blood work. But with this last blood work she had a positive ANA, her last positive ANA was 5 years ago, every other one since then has been negative until now, she had a flare up and was hospitalized. They put her on Lyrica which dropped her blood pressure so they took her off and on Tuesday she had a Sympathetic Nerve Block, and it is helping. I hope this helps.

Hi Their,

I hope your pain levelas are down. Hugs, Roz

We have looked into the possibilty of me having Lymes and have had blood work run and it all came back negative.

I think we know that I have RSD as I developed it straight after I fell and sprained my ankle ... the symptoms were immediate from the minute I sprained my ankle.

The RSD in my arm also started from another injury and the symptoms again were immediate and almost identical.

Thanks for bringing this up though - you are so right, it's so important to check into WHY you have RSD!!