rsd and pregnancy

How did you get through it all? i have RSD, it literally spread throughout my body. I am luckily in remission, but as soon as I went into "remission", which we all know does not mean pain free in any way I found out I was pregnant. I am about 6 weeks and am kind of freaking out. I am meeting with my Dr. today, but I am in pain. What did you do to get through? Did you have to get off of all of your meds? Anyone with answers or insight I would really appreciate it. I never thought I would be able to get pregnant, but surprise, I am and don't want to lose the baby, but don,t want to go backwards into RSD pain. Any help??

I to am pregnant with my 2nd child. I was diagnosed almost 2 years ago so this is my 1st pregnancy with dealing with this condition. I went off my meds all together when I found out I was pregnant. I have been mostly pain free throughout my pregnancy however I am now in my 3rd trimester and having been having symptoms again. I also would like to know things like how soon after delivery do your full symptoms return and did anyone experience any spreading to sites from their c-section or natural birth. How many have had c-sections and how many have had natural births? Was it worse for those considering more children or did have more children with their other pregnancies? Any help would be appreciated. Thank you.

Thank you for your reply! I am in the final stretch and this has been really bad. I too have RSD that started in my right leg. The pregnancy has gone well, the Dr.'s are pretty amazed considering two years ago I could not walk, talk or basically function. But I think the growth sports that occur in the last month are setting off the RSD. While the medical community has made incredible leaps & bounds I have chosen not to have certain treatments that could ease the pain in the last trimester as they could cause rapid growth for the baby. I feel it is best for both of our sakes to bite the bullet (literally) & wait until he is born - I think there is a real need for this topic to be looked at closer as RSD seems to effect women in there early 30's. As I see it many of us have lost years of our lives to this disease. When you get your life back you want everything you missed out on. For me finding jut I was pregnant was a miracle, but it is coming with major problems & blessings. My biggest fear is being able to care properly for my child after birth. I think it will all work out, but I also know that my body could not handle this again. I think your reply pretty much cemented that thought. I'm fine with that, it's amazing to be able to do this at all! Thank you for your insight and I wish you lots of luck and pain free days!

I too am in my third trimester and went (almost) completely off my meds My Dr.'s weighed the pros & cons and felt that by lowering my meds to a certain level I would be able to get through the pregnancy & be functional. It has been ok...This past month has been bad. I'm really scared of the birth itself setting off the RSD....I was told no c-section unless it is absolutely necessary. My Dr.'s have all been in contact with each other as well as the anesthesiologists at the hospital where I will deliver. Personally I think that the pregnancy gas both been a help and a hindrance in regard to my "remission". I think the hormones have helped my body heal, but the real question will be answered at birth - which is coming up soon...Everything I have read from other patients have all lead me to the same conclusion, all seemed to do well with their first pregnancy, but 2nd and third pregnancies did not go as well. I am going to follow this chain of thought - how much can the body handle? So after my son is born that will be it - I don't want to risk any more than I already am. As my Dr. Said to me, I need to be able to care for my child, not be put in a nursing home! I was told a c-section was not an option, unless something happens and there are no other options. I plan on having a natural birth with an epidural. Hopefully all goes to plan...I wish you the best of luck, RSD is such a tricky & odd disease that most people just can't seem to grasp so pregnancy & RSD are particularly difficult - both mentally and physically. I would steer clear if a c-section if u can, I was asvised by all Dr.'s that this was not going to be an option for me- but every RSD case and every pregnancy are different. I am planning to remain grateful to have been able to have a child and stick to one. That is where I'm at, but like I said the experience is different for all. The one common thread I have found us that 1st pregnancy went well, but 2nd & 3rds have been extremely difficult. Lots of luck to you. I plan on checking back in after birth to let everyone know how it goes- I hope h do the same!

Hello. I have been living with rsd/crps for about 13 years. I believe I got it from a surgery to my ankle that went badly. I have had it in my lower right ankle and several years later I needed surgery on my left ankle which also formed rsd. I am now 36 weeks pregnant with my first child. My first and second trimester I notice less pain, but now in my third I notice the pain level being the same before being pregnant and sometimes worse. I have been talking to doctors at the hospital where I will be delivering and unfortunately none of the doctors have worked with someone with rsd. Our birthing plan for now is when I go into labor they are going to give me an epidural right away. Due to my condition and how a needle can inflame rsd, they will be giveing me a local anesthetic before puting in an iv and epidural in. They are going to keep the epidural in me for an extra few hours after giving a vaginal birth. They know that I am trying to avoid a c section so I am hoping for a vaginal birth. If they decide that my baby or I are at big risk and they need to do a c section then the plan is the same just adding a spinal and plan on keeping the epidiral in me for a couple of days after giving birth. The theory of this is to tell my body that there is no pain in the area of the c section, so that rsd does not form at the sight. My understanding, there has been no studies on rsd pregnant women and what is the best treatment for giving birth to reduce the risk of spreading.

I am scared because I am dealing with doctors that have no experience in rsd but they are spending time talking to other doctors at other hospitals to find out what would be best for me. I just know I want a healthy child. I have always wanted children and I am not going to let pain get in my way to get the love of my life.

If there is anyone else out there that has a birthing plan with doctors that specialize in rsd, I would like to know what that plan is so that I can tell my doctors.

Thank you and I hope I was able to help someone that is in my similar situation.

Has anyone on here that recently posted had their baby and can let some of us know how they are doing and what they experienced with their delivery and post delivery. I am due any day now and any information might be able to put my mind at ease. My biggest concern is not being able to breastfeed my daughter if I have to go back on my meds. Thanks

Thank you everyone for sharing your stories! I have had RSD for 6.5 yrs now and am very much wanting to get pregnant. The pregnancy aspect does not bother me as much as the AFTER. Many days I am so exhausted just from pain, meds, and trying to handle the extreme toll on the body. Sooooo...here is my question: How do you care for the baby after he/she is born? Many of you have written about remission during most of pregnancy with returning pain towards the end and especially after the baby is born. How then do you manage to care for the baby? Thanks again!

UPDATE ON RSDSUCKS:
My daughter is now. 9 months old. My pain is the same as before I got pregnant. I average a pain level of a 6 sometime 7 depending what I do with my daughter. When I was pregnant, my first and second trimester was an average of 2 to 4 but the third itcwent up to 5 to 6. I am a SAHM so it has been easy where I don't have to stand on my feet or sit for a long time. I fight through the rough days but I have to say watching my daughter grow and become herself it helps not think of my pain, which helps the day go bye. My husband and I decided to start trying for baby 2. Thanks for writing in and updating. It helps me a lot.

I am currentlt 15 weeks pregnant and have had RSD for 7 years. I have been symptom free since I have been pregnant.

I know this post is over a year old, but I disagree with the statement about how RSD will go when you're pregnant. I got RSD from a work related injury. I got pregnant in 2005 my RSD went away completely and I only feel a little twitch of pain once in a while. The pain doesn't last long at all.

My pain never came back after having my son. I also had a C-section without any problems.

I was wondering what medications you were allowed to take. Did you continue the Cymbalta, or did you discontinue it?

Hi Jess, I am 33 years old and have had RSD for 8 years now (right foot). I want to have a baby but am a bit scared. I know you said in an earlier post you were willing to go over your birthing plan with another member. Is there anyway I could get in touch with you? I think it's awesome you had such success. Thanks and I hope to hear from you.

I myself have RSD and pre-pregnancy, it's not easy at all. All of the medications to treat RSD are unhealthy to take while pregnant or breast-feeding. I know that many would consider this an asinine comment, but this is one situation where mind has to overcome matter. You have nothing but your strength of will to get through it. After the baby is born you will gradually go back to the strength of medications and physical therapy that you were on if you decide not to breast-feed, breastfeeding will affect the length of time to return to treatment. But one look in your babies eyes and every amount of pain to bring them into this world is more than worth it. I will admit, having been pregnant before RSD and after my diagnosis, that the pain during pregnancy sometimes feels unbearable. It's up to you and your Physician on whether or not you would be able to handle it. But if you put your mind to it all the pain really is worth it. I hope this helps and God bless.

Hi there! If you have had any luck with IVF and RSD over 40 can you please email me ? I am interested in finding out success stories! Thanks!

 

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