Heidi,

It's got to be frustrating to think that you are doing well, and this thing spreads. I don't have RSD, but my mother got it after she had a bad fracture in her right wrist from falling on black ice. My mother has always been healthy, like you, she's didn't cry over small things. But I was there through the whole thing, so I can see how someone who's so very active can have a really hard time of it.

It really sounds like you are getting some good care. Plus, you were diagnosed in a timely manner. Someone who was getting therapy the same time as my mom had been suffering with it for three to four months, and had become very debilitated without treatment.

I'm not a doctor, but I would guess that this spread like it did because the damage was originally in your back. Of course, all of the nerves are connected there. RSD can spread quite quickly, but your recovery can be quick too. The number one thing is that you take action, literally.

My mom didn't originally take Neurontin, but when she did, she found that she felt better because she was sleeping better. She couldn't sleep due to the pain, and the burning/shocking sensation you are talking about. Are you taking Neurontin before you go to bed? Maybe it needs to be adjusted.

The other thing that gives her relief is a non-electric heathing pad that has corn in it (some have rice or other grains) and she sprays it with water and warms it in the microwave. She couldn't believe that something that is warm helps to soothe a burning sensation, but it works.

If you are stressed out, I'm sure that you know stress does add to how well you feel with this. I saw my mom start to get depressed and stressed as well. She's a type A personality, so being depressed was not in her nature. She started to feel better when she concentrated on her therapy and by seeing that she was getting better. Keeping busy was the key, so she didn't have to think about how her wrist and hand felt all the time.

As for the swelling, even though it didn't make sense, she found that moving her hand, wrist, and arm, helped to reduce it. Massage also helps, as you related. But her recovery has been frustrating and painful, and she's had problems with her shoulder. Like you, she feared that it was spreading. So she kept moving it, and it's nearly cleared up.

It sounds like your therapy went well, so talk with your physical therapists. Depending upon how the therapy area is set up, I would suggest talking with other patients, if you haven't already. My mom found that feedback from others was really helpful, even if they didn't have RSD. And once she started feeling better, she was the one offering advice.

I know that I can't truly relate to your experience with RSD, but I'm hoping that I can related the sucesses my mom has seen. As for the pain and frustration, I can relate. I have a VERY rare blood disorder that most doctors have NO clue about, and it's no fun to be in pain and the doctors can't seem to figure out what's going on. I have the kind of pain that only morphine can douse, and it doesn't take it away, it only makes it tolerable.

Anways, it sounds like you just hit a speed bump on the way to recovery. Remember that you got better because you worked hard at it. My mom's bone doctor said that it's ironic that RSD tends to happen in type A personalities, but it's type A personalities that tend to heal the best because of their drive. And it sounds like you are goal oriented and driven, so use it, so you don't lose it.

Wishing you all the best!

Purple Pal

---warm wishes from the cold state of Wisconsin---