What sort of surgeries did you have?  I have noticed a lot of people saying their RSD started after carpal tunnel surgery.  How soon after one of the surgeries did the RSD symptoms start?  Are you planning to sue the surgeon for malpractice?

 

As for the symptoms, my son's condition has mainly been improved by alternative medicine.  Nerve blocks, spinal column stimulator and land physical therapy either did not work or made him worse.  What has worked to improve his condition (other than mask the symptoms as medicaiton does) is alternative medicine and hydro therapy.  Unfortunately, as soon as he was able to "walk" in the deep end at hydrotherapy, they threw him out of that program into a "community" program where he was unable to do the exercises and get the treatment that were making him better.  It has taken a couple of months to arrange for him to resume the original therapy but at the evaluation, he was told he can only do it for 6 weeks!!  So, another fight and probably I will have to find another facility which is not easy and will be far away and all car journeys hurt him. 

 

Even better than hydrotherapy, are pk injections with glutathione.  He was having them twice a week which I felt was stopping the RSD spreading and slowly getting him better.  Now he has them 3 times a week and he is getting better faster - definitely in less pain.  No more pain attacks were he is racked with pain for a few minutes or for hours on end.  Before, he could not speak when in severe pain.  Now he tells me in a calm voice that he hurts - an amazing difference.  Unfortuately, we do not get reimbursed for this treatment and it is expensive.

 

Good luck.  My son lost most of his friends but the few that stuck around he treasures and their friendships have deepened.  It also helps to join a group of people who understand what you are going through like this group.  Of course, I am removed from the experience of RSD bc I am not the one in pain.  But I see what a devastating illness this is and nobody has ever heard of it!

 

It took us months and years to understand how to deal with this disease.  The doctors do not know and you have to try everything since it seems that different treatments work for different people.  Don;t give up hope - there are people out there who have been cured or who are in remission so it can be done.

Hi SPJ,

 I live just north of Denver about 50 miles, My case of RSD was started by a carpel tunnal surgery but I couldnt blame the Dr because I needed the surgery 4 years before I finally got it and the median nerve was damaged by being trapped so long.

 I was 46 when RSD happened to me, at the time I still had a 6 pack stomach and played in professional raquette ball tournaments regularly around the state and in Wyoming n Nebraska as well. I rode my bike to work and back even in the winter for a total of 30 miles a day, I sno Skied in the winter almost every weekend and water skied in the summer along with going to ski resorts in the summer and taking my mountain bike to the top and riding it down.

 I know exactly how you feel right now...exactly! The best thing I have done for myself and everyone around me was to accept my condition and make the best of what I could still do. I also live by my self, my wife left me after 5 years of my having RSD. There is a RSD group right in Denver that I belong to, check out www.RMRSD.org We are having a large group meeting and fundraiser this comming weekend on the 27th, I would be glad to pick you up and bring you along so you can meet others in the same boat as we are in. Go to the website, contact Helen the group director if you want...I think it would be good for you. If you would like to talk with me just let me know and I will email you specific contact information, I can call you this weekend or any weekend as I have free long distance on weekends, be happy to get to know you and for you to be a part of our group.

Frank

Yes more aware however some drs still choose there own opinions and agencies still sometimes question it. It is slowly but surely breaking through. Chin up im sure england will slowly make strives also.  

Bucky332

I actually think that most American doctors know very little about RSD.  The same can be said of the physical therapists who have been taught "no pain no gain" and have often made my son worse.   He now refuses to do land therapy and only does aqua therapy and even then has to fight the therapists so he is allowed to do therapy at a pace that makes him better.  He did find one very good therapist but the moment he was better, he was thrown out of the therapeutic aqua therapy program that was making him better and put him in a "community program" where he got worse. Now that he is worse, they have, after two months, kindly let him go back to the therapeutic aqua therapy where again he is improving!  We will see how long they let him stay there.

 

The country that seems to know the most is Holland. 

I suggest you read info on the PARC (Promoting Awareness of RSD in Canada) website at www.rsdcanada.org.  Click on "Dutch Alternative Treatments" in the left hand column.  We have been in contact with Ilona Thomassen who is mentioned on that page.  She cured herself of RSD using an alternative treatment program that she devised herself (she is a nurse).  It took her two years.

We have found that alternative treatments are what makes my son better.  He is so much better now than he was last year.  If you are interested in the details please contact me at [email protected]. 

Linda