Complex Regional Pain Syndrome and Pregnancy: An Interview with Carrie

There is very little information concerning CRPS and pregnancy. Most of what is known comes from the women who have gotten pregnant and shared what they experienced. A friend and fellow CRPS survivor, Carrie, took the time to answer some questions concerning CRPS and pregnancy. Here is my interview with her conducted via email.

1. How old were you when you got CRPS and what caused it?

I got rsd from a car accident in 1998 when I was 16 years old.

2. How many kids do you have and how old were you when they were born?

Well, I was 18 when I had my first and 21 when I had my second.

3. Did you talk with your doctor before getting pregnant? If so, what was discussed.

The first time no, the second yes. We talked about what type of meds I would be able to take and how difficult it would be for me to go through pregnancy again.

4. What parts of your body were affected by CRPS when you were pregnant with your first baby?

With the first, my arms, legs, some face, neck, some back, heart and lungs were affected by CRPS. With the second, my arms, legs, whole face, heart, lungs, kidneys, bladder, feet, whole back and all female organs.

5. When you were pregnant, did you have to see a high risk OB/GYN? What, if anything special, did he/she do to monitor you during pregnancy? Such as more testing, or more appointments than for a "normal" pregnancy.

The first pregnancy, yes I was high risk. The second pregnancy I was on and off again with the high risk doctor, and I had extra ultrasounds because of my CRPS. More stress testing was done than normal because of the stress of CRPS.

They tested for down's syndrome with my second and it came back positive. They were goin to do an amniocentesis, and I had to have my urine checked more offten because the CRPS had spread to my kidneys and I was having problems with them.

6. Did you experience remission, partial remission, none at all during each of your pregnancies?

The first pregnancy I had no remission at all. The second, I wouldn't say I was in remission, but my pain went from 9-10 to about a 6 after the second trimester.

7. With either pregnancy did you have to continue taking any medications? If so, was it necessary to cut back them on them because of pregnancy?

With my first pregnancy, I was taking 300 mg a day of neurontin and 25 mg of remaron at night. With my second pregnancy, I took meds off and on. I only took percoset and that was it. I went off the perocset after nine weeks due to complications.

8. Did you deliver them naturally or have to have a c-section? If you had a c-section, was it because of the CRPS?

I had to have c-sections and it was not due to CRPS.

9. After delivery, did the CRPS come back immediately?

After both deliveries my pain was undermanaged and was horrible. It took me three times longer to recover from the c-section.

10. What happened in the first year after having each of your kids?

After the first one my pain changed and my CRPS also spread to my bladder and kidneys. After the second my CRPS spread the rest of the way to my female organs, and more in the back/spine and face. After the second baby, my CRPS was out of control within six months. That is when I had my pump put in.

11. Is there anything else you want women with CRPS to know who are thinking of getting pregnant?

I think that you need to talk with a good doctor that understands your CRPS. You need to be able to understand that sometimes you won't be able to take your meds while you are pregnant. Don't let CRPS rule you, you rule it. If you want kids, then do it. I don't regret it. If I hadn't had my girls when my CRPS wasn't as bad as it is now, I would never have had kids.