Fwd: Please feel free to share this rant with your groups :) RSDHOPE

[Guest guest]

please read all of this. it wil help someone. cathy

Talking to my friend got my blood pumping here in the middle of the night, after hearing some of the problems patients on his listserv had encountered with some medical implants.

It led to the following thoughts and the idea that sprouted from those. If you find it interesting and positive and not the rantings of a madman, lol, please feel free to share it with your members and listservs

Peace,

HOW CAN YOU HELP?

We patients need to stand up for our rights and our bodies.

We pay through the nose for treatments and Drs and Hospital procedures and we demand very little in the way of proof of success beforehand. Why is that? We spend more time buying Holiday presents, researching the right washer/dryer sets before buying, talking to all of our friends about what the best care is ... but we just accept whatever most of our Drs tell us before they perform procedures on us. Why is that?

RSD is not like a pimple. It isn't going to go away even if we use the wrong cream on it. Mistakes can cost us dearly. They can increase our pain, spread our RSD, and even advance us from one stage to the next.

Please please please educate yourselves before you have any procedure performed, especially an invasive one.

Every time we break the skin, we take a big risk that it will impact our RSD. Actually the most painful form of RSD is called Venipunture RSD, which is started by a needle breaking the skin! This doesn't mean never have your flu shots or blocks, etc., but anything more invasive find out everything you can about it from patients who have had it done more than a year back, especially former patients of your Dr. Use on-line lists like 's and Cahterine's (RSDHarbor) and the other ones out there to find other patients who have had similar procedures. Check out websites like ours and Jim Broatch's and SC's group and others. Isn't taking a few weeks to accomplish this worth it before you make what could be a life-altering procedure?

I know there are some excellent RSD Drs out there performing perfectly safe and effective procedures. I go to a couple myself and we talk to many others each month. But unfortunately they are still few and far between.

Did you know there are still Drs in THIS country who will perform an amputation of an RSD limb in an effort to rid the patient of the pain? To most of us that sounds barbaric and horrible and we know it doesn't work as most RSD pain is IMP (Indepdently-mediated or brain-centered), but it is being done and we hear from them. They do them because they are so desperate to end this horrible pain and see no other way, even after being told it would only make it worse.

I know this is long-winded and not too positive sounding but I wish we could tell you the stories of the thousands of RSD patients who have called us over the years literally crying over the problems they encountered with invasive procedures and/or other treatments that they either did not investigate and went ahead with anyway, investigated and found a lot of negative info and advice but were convinced by their Drs and/or family members that it was their "last resort", or just decided they were going to be in that small percent that actually has them work.

I know the pain is horrible folks. I have had it for 30+ years, full body. I know many others who have had it 25 ears plus, and one man even has had it for 56 years so far. I am sure there are a great many who have had it a long time who do not contact other patients.

I know what it is like wanting to rip your eyes out because they burn so strongly and incessently, to feel the agonizing pain of a sheet touching your leg, to have the simplest and most loving hug hurt you so much it brings tears to your eyes and the eyes of your loved ones. I know the feeling of being stuck in a wheelchair because your legs hurt so much you cannot put weight on your feet. I know the feeling of being up all night long due to insomnia for days and weeks on end, and feeling exhausted. I know what it is like seeing the puzzled and almost ridiculous looks on people's faces when you tell them you hurt your leg, got RSD and now you can't remember anything.

I know these things, as do all of you.

But we can never act out of desperation for relief.

Let's share our stories of things that have helped us cope with the pain! I will even put a whole bunch of them in the Spring newsletter. What helps you deal with the pain everyday? Painting? Yoga? Medication? Tai Chi? Your pets? The computer? What do you do when you are having a flare to make the pain less impactful? What do you do to help you sleep? Or stop the itching? Or the spasms? How do you decrease the allodynia, tenderness to touch, light, sounds, vibration? Swim? Exercise? Walk? Bocce ball? Interact with friends? How do you deal with the daily frustration of getting the public, and medical professionals, educated about this disease? Run or particpate in a local support group? Hold fundraisers for research? Talk to your Congressional reps? Or the newspapers or cable access channels?I am not talking about medication now, but ways, habits, tricks of the trade that have helped you cope with the various symptoms of RSD. Let us reach out and help each other cope with this disease in ways that don't involve medical treatments. There are millions of us dealing with this disease, surely we have hundreds of ways to deal with it on a daily basis?

Send in your ideas and methods and I will publish them in our Spring newsletter as well in a new page on our website that I will put together. This is your chance to do something real positive to help others AND learn new methods for yourself!

Send your ideas and methods to at keithone@...

Thanks for taking the time to listen

Peace and freedom from pain,

American RSDHopewww.RSDHope.org

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