NeuroTalk Support Groups

NeuroTalk Support Groups (https://www.neurotalk.org/)

- Reflex Sympathetic Dystrophy (RSD and CRPS) (https://www.neurotalk.org/reflex-sympathetic-dystrophy-rsd-and-crps-/)

- - Help (https://www.neurotalk.org/reflex-sympathetic-dystrophy-rsd-and-crps-/116632-help.html)

Quote:

Originally Posted by debbiehub (Post 632397)

How old is your son? Young people have a better chance of getting out of this mess if they do the right course of tx,,,,,

Debbie

He's 34, I have read since yesterday and was surprised to see how many children and how a little accident can bring the onset of this hidious disorder.

Al

Quote:

Originally Posted by loretta (Post 632420)

Hi Al, Welcome to NT, although I'm very sorry your son has this disorder. I've had this 15 years, am 61. A teenage girl from Arizona, went to Seattle to Children's Hospital for RSD. I'm sorry I don't have the name of hospital. But I have called hospitals before and asked for Neurological Dept. Head and inquired about RSD. I have found accurate information rather than from a receptionist. Also Administration, Education Depts.
Another good website is rsdrx.com Dr. Hooshmand researched RSD 40 years in Florida. Under his website is called puzzles list. It is 146 questions and his answers. He is retired now. but has an associate taking his patients.
My Dr. is a neurologist, psychiatrist and a pharmacologist. Does trial studies, teaches, just built two clinics here in Scottsdale, AZ with HBOT, which I am going to try. I have full body and internal RSD plus trigeminal neuralgia, fibromyalgia, PTSD, and now having lung issues-possibly sleep apnea-am waiting to get tested. The ketamine trials were done about 10 years ago at the Mayo Clinic-Scottsdale.
On Neurotalk on March 7th there is a question regarding lung involvement and the 2nd post has a website mentioned I found very informative.
RSD reacts differently to many of us as well as meds. Please research before doing anything. Some have gotten spread from a procedure that is supposed to arrest this disorder. I was misdiagnosed and wasn't correctly diagnosed for 4 years. I flew a couple states away to a well known sports injury orthopedic group, he knew in one minute followed up with nuclear med test. Our bones deteriorate. It is a very complicated disorder. Most of us are on a combination of meds. There are meds that help with nerve pain, that aren't opiods.Raised blood pressure is a common symptom, immune system deterioration, and body temperature control. I go from ice cold to red hot steaming. This is a serious disorder and extremely important to get treatment asap. I found physical therapy, massage therapy, and pool 86degree water therapy good for me.:grouphug:
Please ask away, we are 'here for you' and want to provide support and comfort. One of your new friends, loretta :grouphug:

:) Thanks for the info. This disorder is a result of a work related injury and is a Workmen's Comp case which is aggravating an already serious matter. Thanks again for the information.

Al

You are correct in it being mentally taxing to be the caregiver. Find something you enjoy doing that is not related to any type of medical problems and it will give you some mental relief. I think the hardest part is the frustration of not being able to help when they are in so much pain. Take care of yourself otherwise you will not be able to take care of the person in pain.

QUOTE=smile357;632632]You are correct in it being mentally taxing to be the caregiver. Find something you enjoy doing that is not related to any type of medical problems and it will give you some mental relief. I think the hardest part is the frustration of not being able to help when they are in so much pain. Take care of yourself otherwise you will not be able to take care of the person in pain.[/QUOTE]

:) Thanks for your suggestions and words of encouragement. You hit the nail on the head about taking care of yourself (been consumed over the past month) and not being able to provide for the one most in need, again ... thanks.

Al