Hi there!

Sorry I had posted before without introducing myself. I got a bit excited when I came across this board!

My name is Debbie and I am 23 years old. I was diagnosed about 10 months ago after a 3 year goose chase to try and figure out what was going on. My problems started after I had a bone tumor removed from my right fibula. I have been put on nerotin and amitriptaline (sp?) seperatley and they seemed to help a tad, but only for a weeks or so. And, PT was just horriable. It seemed to make it worse. That tens unit really was painfull.

I don't know what course my treatment will take after the baby is born, but as it goes now. I am not taking anything. I have been told that every medicine they could give me, is not safe while pregnant. So the rsd is getting quite difficult to deal with. I thought there would be something they could do while I was preagnant. But I was very wrong.

We are a military family, so we move every few years. Our next move is scheduled for October of this year. I'm not looking foward to having to explain to a new set of doctors what this is, and how it feels. They always look at me like I'm insane! I can see that this is not an easy or fun road to take. All of you have my prayers that one day this will just go away. I know it's wishfull thinking, but I can't do much more it seems.

I hope to talk to y'all soon. Take care!

~Debbie

Hi Debbie,

Welcome to the board! I'm 35 and have had RSD for 20 years. I now use a morphine/bupivacaine pump that helps a lot.

Congratulations on being pregnant. When are you due? Do you know if it's a girl or boy or are you waiting?

That stinks that you have to move so often. I understand your not looking forward to meeting new docs all the time. I HATE seeing new medical people of any kind because they ask all kinds of annoying questions. I am so happy when I meet a doc who actually knows what RSD is. That's a doc who is very hard to find, in my experience.

Welcome again.

Sharon :)

Hi Debbie,

Welcome to the board! I'm 35 and have had RSD for 20 years. I now use a morphine/bupivacaine pump that helps a lot.

Congratulations on being pregnant. When are you due? Do you know if it's a girl or boy or are you waiting?

That stinks that you have to move so often. I understand your not looking forward to meeting new docs all the time. I HATE seeing new medical people of any kind because they ask all kinds of annoying questions. I am so happy when I meet a doc who actually knows what RSD is. That's a doc who is very hard to find, in my experience.

Welcome again.

Sharon :)


Hi! Well, this is baby #3 for us, and the last one! We are due September 12th, but the c-section is scheduled for September 6th. Not looking foward to another surgery, but it's the only option after having two already. This baby is another girl! I'm really excited about that. We already have one of each, and I was hoping for another girl this time.

You must be sooo strong to have delt with rsd for 20 years! I'm sure everyone else is too, but I know this is just the begining for me and sometimes that make it sound soo hopeless. I feel like I have hundreds of questions for other people. The doctors never seem to be able to answer them. Did it take a long time to figure out what worked for you? Where is your rsd? Is there really a chance that this will go into a remission? How is your daily life now? Can you stay active or is there always pain no matter what? I used to run a lot before they found the tumor, and then the rsd. That's why I asked. Geez, I sound like a child with the 20 questions! It's just really nice to be able to ask someone who has already been through this. I hate that anyone else has it, but thankfull that I stumbled across this board.

~Debbie

Hi Debbie,

You can ask all the questions you want. That's why I and everyone else comes here...to help people who are trying to find their way with RSD. As you said, I think you'll get a lot more useful answers from people who deal with this every day than you will from docs who just read about it. Now...if we could just find a doc who also has RSD, we'd be in business :). I know there are some, but none I know.

My RSD is the worst in my legs and it's milder in my left arm. I've had many procedures over the years...blocks, meds, sympathectomy (don't recommend that AT ALL). I had RSD for three years before I was diagnosed. I've had ten surgeries on one knee and two on my right. My doc thought that if all mechanical irritants were taken care of, I had a better chance of the RSD going into remission. Now I have a pump that has morphine and bupivacaine in it which has helped me so much. Painwise, it's not much better than the oral meds, but because the meds from the pump don't go through my system, I'm not depressed like I was when on orals. Also, the bupivacaine in the pump helps with color and temp change and sensitivity. It can numb my leg too if I stay on my left side for too long (a trick that comes in handy if I'm having extra pain).

As far as remission, I know of a woman who did have hers go into remission after many blocks so I guess it does happen :).

My daily life is pretty dull. I still live with my parents. Since I've had this since I was a kid, I don't think I've ever done many "grown-up" things like live on my own, get married, have kids, etc. I think if I had gotten it when I was a little older and settled, life would have been a tad better, but oh well. I have a wonderful, supportive family and I'm extremely close with my sister (who has my niece and nephew) and she only lives about 45 minutes away. So...I used to focus on what I don't have and finally realized (when I became happy again after the pump) that I needed to focus on what I do have because I wasn't appreciating them and enjoying them. Hope that makes sense.

If you have any more questions, feel free to ask. We're also glad you found us. We know how lonely it can be when you are diagnosed with this and you've never heard of it before, much less know anyone with it.

Congrats on your baby girl. Any names picked out yet? I TOTALLY understand if you don't want to share :).

About the C-section, does the doc doing it know about the RSD? They might want to keep the epidural in for a day or two after the surgery (yours is in your lower extremity, right?). I've had a few surgeries where they did that and it worked out well for me. It seems to be the thing to do these days with RSD people. Hopefully, you can find a pain management guy before you have the surgery and he can help you out with all this stuff.

Talk soon.

Sharon :)

hi debbie and welcome to the boards:wave: . sorry about your pain with rsd but congrats on your soon to be new daughter. i have had rsd since this past nov and found this board by sheer luck. it has been a life saver for me , literally.. i will be 41 on this saturday, july 23rd. i have 2 children, 1 8 yr old girl and 1 soon to be 16 yr old boy:dizzy: . my days since rsd have been a living hell:confused: . i actually just officially got diagnosed on june 30th but was told in nov by a doctor other then my own that i had rsd due to cervical spine surgury. woke up with it when i came to. doc hit my spinal cord. so far, i have tried many different meds. nothing has really helped. my rsd is in both hands, wrists, and left elbow including both forearms. daily life pretty much sucks. this is my 1st summer with rsd and the hummidity is killing me. my case is workers comp and they are killing me. i try to stay positive but am very depressed. i have always been a very happy, fun, outgoing person and i have changed 99% since nov. the only good thing is that i quit smoking. i now spend most of my time in bed because of pain and depression. i think if i didn't have to deal with wc, i would be much better. at least i would be able to see the docs i need and get the meds i need. oh well, i guess life can always be worse. well, sorry to sound so negative but so far, i feel alone except for the people on this board who have been great and are real knowledgable and supportive. welcome and i hope you have a pain free day. patti:D

Well, we finally picked a name. We're going to name her Rebekah Alyssa. I have exactly 46 days left of this before I can try and get back on some meds for my leg. I'm hoping that I can get into a PM clinic before the surgery that way they can get the epidurla thing co-ordinated with my OB, so possiably after delivery they can leave the epidural in place. We'll see how it all goes.
I hate that we are all here, but thank you for being here to talk to.

~Debbie

Hi Debbie,

That's a beautiful name. Thanks for sharing with us :).

Sharon :)