RSDSA - Reflex Sympathetic Dystrophy Syndrome Association

RSDSA - Reflex Sympathetic Dystrophy Syndrome Association Review


www.rsds.org



Overall 5.00 of 5 (by 1 user)
 




2009 Advisor
krislynn
Carrollton, GA

Great info on Complex Regional Pain Syndrome at www.rsds.org!!!

5 star rating

a woman, on disability, a lover of yoga exercising, thirty something, a chronic pain sufferer, a person of faith, living with nerve damage, living with complex regional pain
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Pros

    stories of hope, support groups, recent developments, email alerts, latest treatment methods, research, informative


SEP
21
2008
 
 

Reflex Sympathetic Dystrophy Syndrome Association Website


Reflex Sympathetic Dystrophy Syndrome Association (RSDSA)  has been raising awareness of Complex Regional Pain Syndrome (CRPS) since 1984. The website was designed to give patients, family members, and health care professionals the most up-to-date information on treatment, research, support groups, fund-raising, and patient stories. 

What is Complex Regional Pain Syndrome (CRPS)?
Complex Regional Pain Syndrome is also known as Reflex Sympathetic Dystrophy (RSD). It is a chronic neurological syndrome characterized by severe and relentless pain. What happens is nerves will misfire, sending constant pain signals to the brain. It develops in response to tissue damage from trauma, such as an accidental injury or a medical procedure. Even a minor injury, like a sprain or a deep bruise, could trigger Complex Regional Pain Syndrome.

Anyone can get Complex Regional Pain Syndrome at any age. It is more common in people between the ages of 25 and 55. It is more frequently seen in women than in men. However, it used to be rare in children, but there has been a recent increase in the number of cases among adolescents and young adults.

Symptoms~
People with Complex Regional Pain Syndrome have pain that can be constant, moderate to severe. Swelling of affected area may come and go. Some of the skin changes that may occur are dryness, changes in skin color, excessive sweating, increased or decreased hair growth, and changes in the nails. Most people have muscle spasms, loss of motion and use of the affected area, and circulatory changes (affected area will fell cold or hot). Insomnia and depression are common symptoms because of the pain, the emotions, and lifestyle changes.

Treatments~
There are different treatment methods including a wide variety of medications, nerve blocks, and physical therapy. Surgical procedures are sometimes needed to control the pain and the abnormal nervous system responses. Treatment is individualized meaning one treatment method may not work for every patient. Sometimes patients have to go through several treatment methods until they find the right one.

There is no cure for Complex Regional Pain Syndrome.

My Story
Two years ago, I was admitted to the hospital for intravenous drugs because of a migraine headache that I had for several days. I hate needles especially IVs because normally my veins are hard to find.

To make a long story short, the IV was placed in a vein on top of my foot. When the nurse put the IV in, she hit a nerve. I have permanent nerve damage in my left foot now. It so happens 5% of all patients that have nerve injuries can get Complex Regional Pain Syndrome. Just my luck!!

I went to five different doctors before I was diagnosed with Complex Regional Pain Syndrome. This took about six-months. My pain is constant and can be severe at times. I take several medications for the pain. Walking is very difficult most of the time. My foot is very sensitive to touch and it is always cold and swollen. 

I have learned to cope by living my life day-to-day. However, some days are more painful than other days. Giving up is not in my vocabulary. When the pain is severe, some of the things that do help me are yoga, meditation, and prayer. 

I would recommend anyone with Complex Regional Pain Syndrome or know someone with it to visit the Reflex Sympathetic Dystrophy Syndrome Association website at rsds.org. They have excellent information about this syndrome, latest treatment methods, recent developments, stories of hope, support groups, research, and you can sign-up for email alerts. I give this website 5 stars!

Thank you for reading. If you would like to read more of my reviews, please click here!
Krista Lynn

Last edited on Nov 23, 2008



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I_comment_shdw24 Comments about krislynn’s Review

 


krislynn wrote on Aug 8, 2009 at 9:57AM

In response to pitcherday's comment from Aug 4, 2009 at 4:21PM:

Thank you for reading my review on RSDSA. I'm glad you liked it. It has almost been 3 years since I've had RSD. I have met a ton of people with RSD on Facebook and all of us are supporting each other and educating others. Thank you for the sweet comments. ;-) ~Krista Lynn

pitcherday wrote on Aug 4, 2009 at 4:21PM

I like your review. This must be a very difficult thing to deal with, esp. because it affected your mobility. I am glad you have good doctors and are trying new things. Stay strong!

krislynn wrote on Mar 9, 2009 at 10:43PM

In response to TunefulGal's comment from Mar 9, 2009 at 3:53AM:

Acupuncture is one thing I haven't tried yet! I'm currently doing what is called Guided Imagery a form of Holistic Health. I've read this book called "Guided Imagery for Self-Healing" by Dr. Martin L. Rossman. It is a very interesting read. Guided imagery combines deep relaxation and positive suggestion. The book teaches you how to reduce stress, relieve pain, change lifestyle habits, how to stimulate healing responses in your body, and how to use breathing, relaxation, self-suggestion and visualization to live with more wellness.

I've done the breathing and relaxation part even before I read this book. My pain doctor said guided imagery has helped people with severe pain. I have these meditation cds that I uploaded to my iPod. I listen to them before I go to bed at night. I just started doing this last week and every time it puts me in a deep sleep. Then again it just depends on the individual and what helps them get through the pain.

Thank you for reading and sending me a comment. God Bless! ;-)

TunefulGal wrote on Mar 9, 2009 at 3:53AM

If you've had any experience with acupuncture I'd be interested in knowing as it is something we're considering for my husband's nerve pain. We know others who have had good results with nerve pain. But, as you say, pain is an individual matter so...

krislynn wrote on Jan 23, 2009 at 6:40PM

In response to Meowmom's comment from Jan 22, 2009 at 11:05PM:

Thank you! I live in a small town and the doctors didn't know what I had. I ended up go to the best Neurologist in Atlanta. I was amazed he knew what I had after just hearing my symptoms. I've met a few people who have RSD and they have almost the same type of lifestyle that I do. I pray everyday that a cure will be found or at least a better treatment than what's out there now. I hope your friend is doing well.

Thank you for reading my review and sending me a comment! =) ~Krista Lynn

Meowmom wrote on Jan 22, 2009 at 11:05PM

I had a friend who had RSD. Sounds like your daily life is quite similar to hers. Your positive attitude is great, and a boost to your
system.

LadyMagic wrote on Oct 21, 2008 at 3:59PM

In response to krislynn's comment from Oct 21, 2008 at 3:50PM:

I bet your story would also be helpful to others on their website. I think it's great that you emailed your congressmen about that bill. Kudos.

krislynn wrote on Oct 21, 2008 at 3:50PM

In response to LadyMagic's comment from Oct 21, 2008 at 1:33PM:

I have been meaning to post my story on RSDSA website. I have not participated in support groups yet, but I did email my state's congressmen about supporting a Bill for more medical funding for patients with chronic pain. I believe the Bill was accepted.

LadyMagic wrote on Oct 21, 2008 at 1:33PM

This is a wonderful review. I hope many readers are helped with this information. Thank you for sharing your story. Have you participated in any of their support groups or post your story on their website?

Katrena wrote on Oct 16, 2008 at 6:18AM

In response to krislynn's comment from Oct 15, 2008 at 4:30PM:

I think education is so important. Doctors have a hard time treating they know nothing about. And I also hope that they find a cure soon. I know it must be very tough.

krislynn wrote on Oct 15, 2008 at 4:30PM

In response to Katrena's comment from Oct 15, 2008 at 10:42AM:

In recent months, I have noticed more medial magazines are publishing articles on RSD. Yay! Thank you, I hope someday a new treatment or maybe a cure for RSD. That would be wonderful!!

Katrena wrote on Oct 15, 2008 at 10:42AM

Advance for Nurses (a nursing magazine for our region) just recently published an article about RSD. I found that very interesting information. Thanks for the tip on the website. I hope that you find complete relief some day!

krislynn wrote on Sep 30, 2008 at 8:47AM

In response to mysticstarfish's comment from Sep 22, 2008 at 1:45PM:

I am glad you enjoyed my review on RSDSA. Thank you for the nice things you said that means a lot to me. Take Care!!

krislynn wrote on Sep 30, 2008 at 8:32AM

In response to AngelaWLaFon's comment from Sep 23, 2008 at 3:21PM:

Thank you for Welcoming me to Viewpoints. I am glad you enjoyed my review on RSDSA.

krislynn wrote on Sep 23, 2008 at 5:08PM

In response to Jo's comment from Sep 23, 2008 at 10:27AM:

Thanks, Jo! Living with a disease or disorder is usually tough but when it involves chronic pain it makes it that much harder. So many of these conditions do not have a diagnostic test that can be done on patients for easier diagnosis. Thanks for the hugs and you take care.

AngelaWLaFon wrote on Sep 23, 2008 at 3:21PM

Very helpful review. Welcome to Viewpoints and keep these great reviews coming:)

Jo wrote on Sep 23, 2008 at 10:27AM

This is fantastic though I feel for you. I can't imagine what you're going through though it sounds as if this is an autoimmune disease/disorder. I have Sjogren's Syndrome. The info is wonderful. I'm sure it will make it helpful for others who suspect they have RSDS to avoid the 5 doctor routine which many of us have to suffer through while suffering. Hugs, Jo

PattyTherre wrote on Sep 22, 2008 at 6:03PM

In response to krislynn's comment from Sep 22, 2008 at 2:35PM:

It's reviews like this that can really change lives. I'm sure it will help others. I'm going to the website just to see what it is all about. No one can ever diagnose me so I have to do it myself although I doubt my chronic neck pain is due to this. Ya never know!

krislynn wrote on Sep 22, 2008 at 2:35PM

In response to PattyTherre's comment from Sep 22, 2008 at 1:48PM:

Thank you. This is such a new syndrome. Even some doctors are not aware of it. I had to go to 2 different neurologist before I was diagnosed with it. Hopefully my review will help others or least spread the word about this website.

krislynn wrote on Sep 22, 2008 at 2:00PM

In response to mysticstarfish's comment from Sep 22, 2008 at 1:45PM:

Thank you for the kind words. I try to be strong. I could not get through each day without my family's support and encouragement. I hope my review will lead others to the website.

PattyTherre wrote on Sep 22, 2008 at 1:48PM

This is a very interesting review. I don't have this but I do have chronic pain from a neck injury that will never go away. Coping with pain is so hard yet, as you said, giving up really isn't an option. Thanks for this review. I hope others with Complex Regional Pain Syndrome will see this and get the support they need.

mysticstarfish wrote on Sep 22, 2008 at 1:45PM

I am so sorry you have to go through this. It sounds like you keep your spirits up which is a great way to deal with it. I can't imagine how one day you are fine and the next to be dealing with this. I know there must be times when you feel like just screaming and crying, but don't give up! You sound like a very strong person. I visited the website and it's a great resource; thanks for sharing it.

LisaCarey wrote on Sep 21, 2008 at 4:34PM

I have fibromyalgia and know what you mean, it is so important to find wonderful resources for information and care. Great review.

Bryan-Carey wrote on Sep 21, 2008 at 3:19PM

I have never heard of this, but I do know people who have these symptoms. I need to tell them about this and direct them to the web site. Thanks for the info!

krislynn wrote on Sep 21, 2008 at 2:55PM

In response to LoveisJoy's comment from Sep 21, 2008 at 1:55PM:

I never heard of this syndrome before either until I was diagnose with it. You will be surprised at how many doctors don't know about this syndrome especially neurological doctors. The bad part - - there is no specific test doctors can do to diagnose it. Doctors mainly have to rule out other conditions first. This is why some patients have to see so many doctors. The key is getting diagnosed early before your pain gets severe. Good luck with your friend.

LoveisJoy wrote on Sep 21, 2008 at 1:55PM

Thank you for sharing this incredible information. I had not heard of this. I have a friend who has been confounded by bouts of pain, that doctors have no answers for. I'm going to the website to learn more.


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