Advertisement




More DailyStrength
Health Event Calendar
See what's new on the site
Step-by-step Tutorials
How to use DailyStrength
We're on Facebook
Check out our page
Follow us on Twitter
Read our tweets
Get Cool DS Stuff!!!!!
Shirts, Hats, Baby Wear
Discussion:
RSD Hereditary???
Watch this 
View More Posts Ignore
My mother has RSD and I recently heard that it might be genetic. Does anyone know about this or has anyone else heard this?
Posted on 01/14/09, 12:18 am
5 Replies Add Your Reply
Reminder: This is a support group for Reflex Sympathetic Dystrophy. We trust you will do your best to remain positive and helpful. For more information, see our rules of the road.

You may also create your own Member Groups where you can moderate the discussion.
Comment:
Email me when others reply to this topic help
View More Posts Ignore
Reply #1 - 01/15/09  7:37pm
" Hi, I have never heard about RSD being genetic before, however I recently spoke with someone who was diagnosed after she realised her symptoms matched those of her Aunt, who has RSD. I thought that was pretty interesting...I honestly don't think they know enough about RSD to be able to tell us. They have only been recognising it in the last 20 years, which means there could be generations of sufferers in our ancestry that went unknown and unrecorded...I really hope for their sakes there weren't! "
View More Posts Ignore
Reply #2 - 01/15/09  8:15pm
" Hi, I'm sorry to hear that your mom has RSD. I'm hoping that she might be one of the lucky ones where her symptoms are not full-blown, or are very easy to manage w/ as little medications as possible. My husband has had it for almost 6 years now and isn't one of those lucky ones, but we do what we have to do. :-)
As to your questions about whether or not it can be genetic? I would have to say that I don't believe that RSD can be genetic. However, the susceptibility that different people have, that make them more likely to possibly get it, could be. That is a very good question. One never knows.
My husband was given a book by his family physician that she ordered specially for him on the subject right after his initial diagnosis. It has a LOT of good information about RSD in it. It's called, "Living with RSDS" (the S on the end is for syndrome).

There is information that goes back to Civil War times on RSD. It is sometimes called CRPS as well (Chronic Regional Pain Syndrome).
Knowing that something as small as having a splinter could bring on the onset of RSD, to something as devastating as a broken or severed limb, leaves so much room for questioning.
My husband and I were told that he was unfortunate enough to have his accident at work at the wrong time in his life, the wrong spot on his body, the wrong scenario all the way around. We were looking at the doctor as if to say, "Huh?"
Different people are more susceptible of acquiring RSD. It's in their make-up. And, if at that "right" time in life events occur, the probable outcome is great.
Thats why I said that there MIGHT be a possibility that one's level of susceptibilitly to acquire RSD might end up being a genetic thing, but not one just getting it because a family member has it.
Thankfully, there's the "obvious" of if susceptibility were found to be genetic, unless your body were to be put into a condition/situation for it to become acquired, you would not need to worry (and no I obviously don't mean the same scenario that caused it on the relative, as one can get it from almost anything!)
We were also told that there's a certain time frame in one's life where one is more susceptible, and that window of opportunity (for lack of a better phrase) has vast distances on either side of it where same or similar circumstances would not produce the disease. It's just so odd!
I would recommend that particular book. (And I'm sure there are many others out there that I can't think of at the moment that might be as good or better?! I just know that it filled us w/ a lot of facts that we did not have and we felt it did a very good job of informing us further than even all of my research I'd done online.) Perhaps your library carries it? If your mom goes to pain centers, doc's, therapists, etc., on a regular basis perhaps you could ask to go along to ask some questions of your own?? You might want to do some research on your own before that, so that you can assure them that you are diligent in wanting answers for both your possible sake as well as your mom's. Just be careful in your research. There's a lot of garbage out there in any research we do, and RSD falls into that real well. Two doctors who work in the same clinic could give you very differing theories on the subject.
I wish you the best of luck in your research, in all of the situations you're going through right now, and hope that tomorrow is a good day for you, and that each day will get even better after that. "
View More Posts Ignore
Reply #3 - 05/10/09  1:37am
" Yes, RSD and related ailments run in families. A doctor in Texas who has been successfully treating RSD and related conditions for over 15 years discusses this in his book, Pain Banishment. You can read the first part of the book for free on Google Book Search. It's also on Amazon. This doctor has done an amazing amount of research and really knows an incredible amount about this disease. He has had it himself. His web site is paindefeat.com. He is worth checking out. There is hope out there with him for all RSD sufferers. He has a very long list of grateful patients. I know because he treated me, and I have met many of this other patients. "
View More Posts Ignore
Reply #4 - 11/26/10  11:58am
" My mother had RSD. She got it by falling off of a family memebers steps and tearing ligaments in her leg but after the ligaments would not heal and the sympthoms progressed they found out that she had RSD. I watched my mother suffer for two years before she passed away. She passed away from overdosing on her medication she was on for the RSD. It is unknow whether she did it on purpose or if it was just to much for her body to take because the amount of medication in her system was not that much more then what she was perscribed.
I have done extensive research on this subject because I was also scared that one day I may end of with RSD. All of my research points towards no, it is not genetic, but since they don't even know exactly what causes people to have RSD how can they know if it is genetic? There are no test to be done to see if one day you will have it. Therefore, no there is no way of telling if it is genetic. I will say that I have had a few surgeries and accidents in my life, and I did not get RSD. When I bring it up to my doctors they tell me that it is not genetic so I have nothing to worry about. Unfortunately there is not a lot known about this disease so a lot of questions for people like you and I are left unanswered. "
View More Posts Ignore
Reply #5 - 11/28/10  12:02pm
" I agree with both dantesnana and TX believe it or not. I've had RSD for 11 1/2yrs now and have been researching it for 11yrs. I too have the book Living With RSDS which if you can't find at the library, you can get it through RSDS.org.
I've known too many people that have RSD in more than one person in the family or a combo of RSD and Fibro. My Aunt has Fibro and I have RSD and our genetic make up is too identical for me to deal with as she is 74 now and I just turned 43.
I knew a lady on a different group who has RSD and her daughter started out with a diagnosis of Fibro and then went into full body RSD so it's not out of the question.
I also believe since they are still trying to understand the cause of RSD, science hasn't even a clue if it's truly genetic or not yet but one day I think they will find that RSD and Fibro are closely related and more than one person in a family can have RSD.
It has been around since the Civil War Era and knowing that and how little we hear about RSD until we have it ourselves or a loved one gets it is sad to me as I don't believe it's as rare as they say it is.
The more we are proactive in our own disease and educate ourselves, the better off we are.
I have had it for a very long time but it hasn't gone full body on me; not yet and hopefully never although a recent study showed that anyone with RSD in the 10 to 15yr range will most likely go full body within that time. That wasn't great to hear as mine has spread even this year.
I hope one day we know as much about RSD as Fibro and more.
Rhonda, IN "

Add Your Reply
Advertisement


More From Around the Web