Reflex Sympathetic Dystrophy (RSD)

[GMCGOTTY]

MY WIFE HAS JUST BEEN TOLD SHE HAS RSD SHE HAS HAD BRACHIAL PLEXUS FOR THE PAST 2 YEARS.WE HAVE BEEN IN CONTACT WITH MANY LOCAL DOCTORS,BUT NONE OF THEM SEEM TO KNOW WHAT TO DO,OTHER THAN GIVE HER PAIN MEDS AND SEND HER ON HER WAY.[WE ARE IN NEW JERSEY].ARE ONLY INFO IS WHAT WE GET ON LINE.IN THE PAST MONTHSHE HAS GOTTEN ALOT WORSE.SHE NEEDS HELP WITH EVERYTHING DRESSING,BATHING, EATING,LEAVING THE HOUSE IS A DISTANT MEMORY.IF ANY ONE COULD PLEASE GIVE ME ANY INFO AT ALL IT WOULD BE GRETLY APPRECIATED.WE FEEL VERY ALONE AND SCARD,NO CAN SEEM TO HELP US.THE RSD AFFECTS BOTH ARMS AND NECK.EVERYDAY IT APPEARS TO GET A LITTLE BIT WORSE.THANKYOU

[okiebutterfly]

Hello and welcome to the board! I am really sorry to have to meet you this way... But you are doing just what you need to do, get online and inform yourselves! Knowledge truly is power! Plus, this is a great board to make new friends and bounce ideas off others like you and your wife...
Anyways, my advise to you and your wife is to do your research, and find a specialist. It takes some time to find a good one, but it will happen. Just hang in there, and dont give up!!!

Pain Free Hugs,

Christy

[GMCGOTTY]

christy,thanks for your responds.it is a very scary and lonely disease.it is very comforting haveing a place to go where people understand what you are going though.you signed off your response with 'pain free hugs',people with rsd are the only one who truely understand that.we try to talk to family and friends,even doctors buy they have no idea how rsd really effects the patient and their immediate family .again thankyou [please excuse my tpeing this rsd effects everything i do]

[winston22]

I myself was diagnosed with RSD after my fifth back surgery. I have it in both of my legs. I had a spinal stimulator implanted that has helped alot. My best advice is to make sure that you are being treated by a pain medicine doctor. They seem to be the most educated in the field of RSD in my experience. I live in CLeveland and have the benefits of the Cleveland CLinic and have been to many doctors dealing with my back and all of my problems. However my pain management doctor who isn't affiliated with Cleveland Clinic at all has been the most helpful with the RSD.
I know this can be a very stressful and even scary thing to try and live with but you will get through it.
You must read all you can because like many illnesses this is one that the patient must be their own advocate.
Staying up todate on the new treatments and discussing them with the doctors is crucial. Search for any new clinical trials. Ketamine injections are helping many people. Lyrica has been shown to be a big help for many. Just research research research.
I wish your wife less pain today than yesterday, and a brighter tomorrow than today.

Lisa

[Lily]

Wiston, I just wanted you to know your not alone.We will be here for you always.I'm so sorry about your wife and i know you both are scared because i'm going through the same thing and it has effected my husband also.I have full body rsd and everyday i can tell how it's trying to take over my body and my ability to do simple things in life.I never thought this would ever happen to me either and only being 37 yr old and i use to be very active until i had to have a spinal fusion and got rsd right after.My whole world has turned upside down but i keep on fighting because they are friends like you that help give me the strength to carry on.If i couldn't communicate with the people here who are fighting this disease together and have my family i know i would give up and let rsd win the fight.Any time you need someone to chat with or just to help relieve some of your stress and worries i will be so happy to help you and you my could even help me.That's what friends are for and please remember.I will be here for you always.Lily

[babymonkey]

Hi. I do not have RSD, but dear friend of mine whom i just met about 3 months ago, has had RSD for going on 13 years. Since i met her, i have been doing alot of research to find a treatment that will help. I cam across a Treatment called "Hyperbarc Oxygen Therapy(HBOT)" It is not invasive and is a treatment using just pure oxygen at a higher level. And the studies i have read about, 13 out the 15 people they have done this on, have ben able to return to i believe it was anywere beteen 85% and 95% back to normal living. and Some have even returned back to their job and former hobbies. They have also been able to get a full 8 hours of sleep at night. And the pain and swelling have reduced almost compltely. For the treatment, the put the patient in a chamber with pure oxygen for at least 90 minutes...and it s FDA approved...If this sounds like anything you might like information on, please feel free to email me at..[moderator note: e-mail address has been removed].....and I would be more than happy to email you all the info i have emailed to my friend. I believe that God has put my friend in my life, to show me which path i need to be on in my career(when i starts that is) I will be graduating from higschool next year and REALLY want to be a CNA and hopefully raise wmore awareness for this awful disease...I wish you and your wife Many Blessings. And feel free to contact me if you are intrested in the information.. God Bless You Both.

[Lily]

babymonkey, Thank you for the info on the HBOT that is very interesting and i plan to do some research on it myself.I have full body rsd and it's really hard to decide what to do and i'm always glad to hear of a new procedure,I admire you sticking by your friends side the way you do because rsd is a very scary disease and also depression comes along with it and great you are there for her.I was in the health care profession and you seem to have a big heart and that's what it takes so follow your dreams.I always loved taking care of pts and i would give anything to be able to go back.I'm very proud of you.I hope to get to chat with you sometime and if i can help you and your friend i'm here for you always.Lily

[babymonkey]

And I also would love to be there for you if you ever need to talk. And I will be keeping you in my prayers in hope of some comfort or relief and hopefully even a cure! So as my friend and i say...(((Many Soft Hugs!))) And MANY MANY Blessings

[Lily]

babymonkey,Thank you for your support.Everyone needs a friend when they are facing something that has turned their world upside down.also thanks for your prayers.i'm looking forward to chat with you.God bless you.lily

[babymonkey]

you are so very welcome..I would just like to know HOW to chat with you?? I just signed up for this yesterday, so i dont know hardly anything about this site yet..God Bless