Im new to the board. I was first diagnosed with rsd when I was 10 years old after a sprained ankle. I had my ups and downs with it from there. At one point it was almost full body but I kept on and didn't give up even at the worst point when i felt like dying. At 19 years old I was in remission. I would get aches like arthritis when winter came but it was short and didn't bother me. Now at 28 its coming back. I don't know why. I don't know how I'm going to handle it now. My husband has now clue what rsd is. I'm trying to get him to understand but it's hard. I have 2 young kids. My dr before is retired lol. So I'm trying to search for a new one. I just don't know how to go through this again. I don't want to. I know I don't have a choice clearly but it just sucks. It ruined my life before. I don't want that to happen again. I guess I'm just scared to go through this again. I have my kids and a husband to think of now.
Location: San Francisco, California, United States
Re: Back after 9 years
Hi Sandra -- welcome! I hope that you find a fantastic doctor to help you get ahead of this disease. I found mine through pain management at a medical school. I have a great physical therapist, also through the medical school, and she has more hands-on experience than the MD, along with a lot of practical suggestions. One thing I learned from her is that the approach used to treat children is very different from the approach in adults. Children can resume activities quickly, whereas adults need to be gradually eased back into things.
Hi, Sandra. I'm so sorry to hear that your RSD has come back. How discouraging and difficult!!! Your story really hits me in the gut because our teenage daughter has been diagnosed with RSD and been in and out of remission three times in the last 18 months. She's 16 and in remission now but I'm so afraid for her.
I hope you can find a good doctor and get going on some treatment. What helped you before? Our dd has gone into remission because of Hyperbaric Oxygen Therapy (HBOT). I'm convinced that this might be the best possibility for remission out there. I know that nothing works for everyone all the time but it has helped her twice.
Another treatment I've read about is LDN - Low Dose Natroxone (sp??). We haven't tried that but from what I've heard, it has been successful. I want to find out more about that.
I'm so, so sorry to meet you under these circumstances. I will pray that you will find an excellent doctor and will get excellent results. Some treatments have changed in the last few years. One big change is NO ICE!! Only warmth/heat on your RSD limb.
Thank you both. Im trying to keep a positive attitude but it's hard.
So sorry faithmom about your daughter. I know how hard it is to be a teen with rsd. I've never heard of hbot. I will have to check it out. I did aqua therapy 5 days a week for couple of years. That and Meds is what worked for me before. Also a positive attitude makes a world of difference. I think I had gotten to the point where I was done with rsd and having no life or friends. I was determined to be normal. Within a year I was pain free and had my first job and finally making friends since I was never able to go to high school. Had to do the distance learning thing.
The following user gives a hug of support to Sandra07: FaithMom (11-19-2012)