Pregnancy and RSD

[LisaM]

I know there were threads on this before, but since we don't have access to the old threads, can we start a new one?

I'm 39 years old...my son is 15...and I'm soooooo missing that second baby that I always wanted and never had. Now that I'm with someone that I really feel I will be with forever, who also wants a child, I am seriously considering it....if not for this danged disease.

I know there is the possibility of having a child while having rsd...and also the possibility of it bringing on remission. But what if it doesn't? And what about the pain meds? I've been reading up on it, and reading that some people stay on the duragesic with no harm to the baby.

Any opinions? Any advice? Anyone want to yell at me for even THINKING about it?

Hugs
LisaM

[Diamon Lil]

Lisa: There was a lady here that recently had a baby while having RSD. I think she joined another forum called Brain Talk 2. If memory serves me correctly ( I cannot rely on it any more) her name is Kathy and is from Australia. Try contacting her at BT2 to get some advice from her. Good luck! Regards, Lil

[LisaM]

where can I find braintalk 2? I've never heard of it...

Thank you :)
LisaM

[Diamon Lil]

Just Google Brain Talk 2 and you should find it. Good Luck - Lil

[RSD_Angel]

hi LisaM,

I know that there was someone here named Kate that just had a baby while having RSD.. she acutally had 2. After the first one, she had the ketamine infusions and was good for i think 6-8 mos and then tried to get preg and did , and then the RSD became active again adn had to go throu gh the whole preg with out meds, and was scheduled to have another infusion right after the baby was born. I havnt heard from her since she had her little one, but she too was from Australia. She should be back on here, once words gets out that the boards are back up and running!! (thank goodnesss.. i missed you guys soo much! hope more of us find it back here)

;) Amber

[WellLovedMom]

LisaM,

Ooooo, a baby!!!! (I'm 39 too and every so often am hit with "I want just 1 more!!!" -although I do have an 8 year old son and 10 year old daughter). As for pain meds and remission, my RSD did have SOME level of remission while I was pregnant. My challenge was that I suffer from SEVERE chronic migraines (up to 5-7 days per week). My doctor perscribed Demoral 50mg tablets, which I did take when I absolutely HAD to.

What I tried FIRST was before getting pregnant, I went throught a bio-feedback class (I think there were 12 sessions). While I have never been able to completely eliminate or control my pain with bio-feedback, it DOES help, and allowed me to go for the pregnancy, feeling that I had a few tools to fall back on if I needed. For me, just having a couple of options to fall back on if the pain got too bad gave me a HUGE sense of security, rather than facing the fear of pain.

I had also used a TENs unit in the past for my RSD, but as it hadn't been tested on pregnant women, they advised AGAINST using it during pregancy. (Of course, this was a few years back!)

My daughter also suffers migraines AND mild RSD, and has had GREAT success with relaxation/visualization CDs. Her favorites are one of the forest, and one of the beach. She is VERY anti-medication (GO GIRL!!! -can't tell I' a proud mom here :D ) so we worked together to find alternate first and second line pain fighting methods. Every once in a great while she needs the strong stuff, but she swears by her CDs. I just went on eBay and bought several inexpensive ones for her to try out.

Hope this helps, and keep us posted!

Maria

[kathrynmham]

Oh goodness, I'd be interested in any responses or information about this post, as well! We are also wondering about trying for another baby and I have RSD, too! (Nice to meet you Lisa M!) Two to four children was always our plan, but I was just diagnosed and we only have ONE. UGH! I would NEVER yell at you for even thinking about it, ha ha, but if you do decide to have another, keep in touch with me. I'd like to know how it goes, and who knows, maybe we'll be pregnant at the same time?!?! :D

[Sandel]

Hello I hope this site helps.. :)

http://www.jd-dch.com/rsd_preg_pals/

Hugz,
Sandra

[Sandel]

oops seems theres link problems on that site.. keeps shunting me to another website that has nothing to do with the other:confused:

[JennyLynne]

Women often go into remission while pregnant, as it states here (and why)
There is no known explanation of why this disorder occurs in some people and not others. Some believe that sympathetic maintained pain is caused by nerves and tissues that have healed with changed DNA, The bodies immune system then sees the nerves and tissues as "enemies" and attacks them causing inflammation and pain. This autoimmune response can explain why some women with RSD have remissions while pregnant. Hormones produced during pregnancy, responsible for keeping the bodies immune system from attacking the fetus, temporally stopped the RSD.
source: http://artzoo.com/health/rsdcrps.htm

I hope these sites help you out too! *hug

http://www.aboutrsd.com/pregnancy-and-rsd.htm
http://www.rsdinfo.com/rsdandpregnancy.htm
http://jd-dch.com/rsd_preg_pals/titlepage.html

[kathrynmham]

Wow, that IS helpful! Hmmm. I'm concerned about the stimulation device issue, though, because my doctor is pretty decided that we are going to have to have that put in for me. I start my trial next week...or this week, I guess it is now. I see him tomorrow, so we'll see what he says. I didn't know that would interfere with the pg, though. I wonder if we could disable the device during PG? I need to ask that. Thanks for the info, y'all. Big help!
I tried the JD link, Sandel, but it did the same thing to me...sent me to something about technology and graphic art or something. I dunno!!!
I did hit the rsdhope site that was on that site, as well, and read every page there when I was first diagnosed...it's a huge help. Not much on pregnancy though. :(

[dolphin]

I can only tell you of my pregnancy, but I had a SCS when my Josie was born. My pain was better during the pregnancy, but came right back after my hormones went back to normal. I stopped my medications when we were trying to get pregnant, and did not restart them until after the delivery. Sad to say my little one has passed on, but had nothing to do with my RSD, and another pregnancy is out of the question for me and my husband. But we do have 2 other beautiful, talented litte girls, who make my life worth living. I say go for it. You only live once, and you never know when it will be to late.

[Sandel]

Hi Katheryn.. I just found this in a search..
follow the links,
hugz
S

http://forums.obgyn.net/pregnancy-birth/P-B.9912/0274.html

[amb97]

I got pregnant with my fifth child about 3 weeks after having ankle sugery (the surgery is the suspected cause of the rsd). Of course, I had to stop all meds, etc that I was taking for the injury. My doctor and I thought the surgery had been a success because I was almost completely pain free throughout my entire pregnancy. About six weeks after my daughter was born, the pain and swelling returned with a vengence, and when my orthopedist couldn't find any cause, he finally gave up and referred me to pain management. That doc diagnosed the rsd. I say if you have a good doctor who will work with you, go for it. At minimum you will have the child you want and you could possibly have 9 blissful months of no rsd! My only complication is that I had to wean my daughter early to start rsd meds, and this has been really traumatic for me because she's my last one. however if you are prepared for this ahead of time, it might not be an issue for you. Good luck!

[nopainever]

Hi all:

I haven't been on here in awhile. Probably since I was 16 weeks pregnant.

I just had my beautiful baby girl, Skyler Alexis, on Dec 5th. I was on the 75mcg patch all throughout my pregnancy. I will say that I did experience preterm labor at 36w2d...She was delivered c-section at 36w5d. she weighed 4lb13oz...and was 18.25in long. She was a preemie and was admitted into the NICU for 10 days. She only had trouble drinking out of a bottle. However, the nurses knew that I was on Fentanyl and tried to tell me she could be withdrawling. Although, she was just being a preemie, they treated me like a drud addict.

She did the abstinence scoring and she never tested for withdrawl. It was very hard not to take her home. But, she is home now and doing great.

I did have REMISSION throughout my pregnancy. From 8 weeks-32 weeks...Then the pain really returned and my dr wanted to schedule a c-section 2 weeks early, though she decided to come 3.5 weeks early, lol.

I had a spinal for my c-section and have had huge relief in my lower limbs. I am wondering how long this will last.

If anyone has any questions, please write to me. I will be happy to help.

Gentle Hugs,
HeATHER

[GalenaFaolan]

*Hugs* Congrats on your beautiful baby girl!!! I absolutely LOVE the name! :D My oldest daughter is Heather too so that's an awesome name as well. LOL

It is fantastic to hear about another RSD'er who had a baby successfully. Each story that comes out helps give the younger women who want to have families hope that it'll all be ok and that they CAN have a family despite the RSD. Thank you for coming back and telling us. I'm so happy she is healthy and happy! My first son was born 6 weeks early and weighed 4lb 12oz, surprised the heck out of the docs! LOL He was so tiny they thought he was only 2-3lbs! I had all 4 of my children Pre RSD though. I'm rather glad now I started young and got it all done with. LOLOL

Hugs,

Karen

[RSDgirl35]

I am 16 weeks pregnant and have RSD, does anyone have any experience with this? None of my doctors have ever had a pregnant woman with RSD and I can't find anyone with any experience. Is there anything I should know? There is little information on this for those who are pregnant.

[angelrsd9]

ok i have had RSD for 11yrs and was 16 when i got pregnant and 18 is when i i had my oldest and 21 when i had my youngest.. i never had remission with the pregnancy i had to go off all meds. and with my youngest postpone my pump placement. so i just wanted to let you know that its a 50/50 thing you may have remission you may not. mine actually spread internally from the csection. i had full body to begin with and now with organ involvement. i am not trying to scare you just let you know that you may not have remission. like others have said there isnt alot of info out there about RSD and pregnancy and there havent been alot of us that have done this either.. i wish you the best of luck and you can PM me anytime .. with questions..

carrie

[RSDgirl35]

I have not gone into remission, but I have experience some decrease in pain. It's enough that I'm only on vicodin for the pain, and even then maybe only once a week or if I have a flair up. I would be interested to know you would recomend a csection. I understand that it can spread the RSD but I also know that vaginal birth can do the same.

[angelrsd9]

hi
im glad that your pain has been super low thats great!! on the csection i wouldnt reccomend it .. i had no chioce i have a family issue besides RSD LOL that we dont dialte. i only went to 1 on piticon and preterm labor from 20 wks and on .. full contractions. so i had no choice i would try to do vagnial delivery with epidural if i were you and your PM can even come and do the epidural if he is willing, .. any other questions that you have dont hesitate to ask.. or pm me