Thank you very much Annie
 

I saw something about femoral fractures during delivery or something to that affect, which doesn't sound good. I read one other thing about the rsd coming back WORSE, and that scares me cuz mine is in my hands and arms...and how can you hold a little bundle of joy that way, ya know?

I found at one time a yahoo group or something called rsd pregnancy friends, but nobody was a member! Then there was a message board someone TRIED to start...but there were no posts. It seems like people have tried to start support groups, but never got anyone to participate. Guess once the baby is born, the person forgets about it and moves on with their life.

I'd LOVE to be able to just get thru the nine months, and stay at the level I'm at, which is tolerable. Knowing the med combo that makes me tolerable. Although I know with the hormonal changes that come along with pregnancy, we may have to start from square one. I read on another site a woman who went to a high risk OB and they kept her on the duragesic fentanyl patch, and took her off all other meds, the most important being the antidepressants she was on, for the nerve pain....and I'm on effexor for MY nerve pain. And it helps the "burning" feeling. But she said everything was wonderful.

I'm skeered!!!!!

Thank you for all your help, Annie! You're a saint :)

very relevant paper--narcotic use & RSD symptom change during pregnancy
 

Found a pretty relevant paper:

"Prenatal and breast milk morphine exposure following maternal intrathecal morphine treatment"--Journal of Human Lactation, May 2000, 16(2): 137-42

Mom was recieving intrathecal morphine during pregnancy due to RSD of right lower leg (10 year duration). Baby was born 3 weeks early, but did very well, with no signs of narcotic withdrawl. Mom's leg pain increased significantly at 29 weeks gestation, requiring 2X-3X the usual amount of morphine, but the pain went back down again by ~1-2 months after delivery.

Wow!
 

We need to change your name to "Annie the Research Queen!" In all the research I did, you are finding more than I did! Thanks sooo much Annie! You're a gem! :)

Hugs
LisaM

from science geek
 

Hi Lisa,

Actually, I'm more of a "science geek", but glad to help.

Annie

Hi Lisa!

lol on the "mine of information" comment- I think I'm more of a guinea pig! :p

I will come back later tonight and tell you my story, but my dinner is ready right now!

Stay tuned! :D

x Kate

Ok, I'm back! Not after dinner like I expected, but two days later-- the effect of having four kids! :rolleyes:

I've had two pregnancies since my rsd started. For both I went off my regular meds (with dr's ok and co-ordination which is HUGELY important). My first one was a breeze in rsd terms- I went into a kind of remission while pregnant and only had symptoms in the last month when the fluid retention started flaring it up. But my symptoms came back within hours of the birth, and way worse than it was before.

With my second (Hannah, my fourth baby) I was getting great relief from ketamine infusions, and able to stay off meds for long periods of time, so thats why we thought we'd have one more baby. Before then there was no way I could go off my meds and have baby #4, I was just too fargone. But the ketamine changed that. So I fell pregnant 6months into my second ketamine infusion pain-relief time. Unfortunately I started getting flareups that I couldn't take anything for, and then had my pain spread to my leg during the pregnancy thanks to a spiderbite. Although it wasn't caused by the pregnancy, the pregnancy meant I couldn't get pain relief for it and that was horrible. And then my arm pain came back pretty regular as well.

By about 7 months I was taking endones occasionally (maybe 2 or 3 in a week), but that's it. I otherwise had to stay med free. I know another RSDer who kept taking MS Contin thru her pregnancy with the understanding she'd wean off it at 7months so her baby wasn't dependant on it, but she instead went into labour prematurely so the baby didn't get to wean off it first and was born dependant on the meds.

I was very much dependant on my husband to do everything, and it was really rough. If I knew the pregnancy was going to be like that, and I wouldn't get a remission or benefit from the ketamine still, I wouldn't have done it. As much as I love my daughter and wouldn't trade her for the world, it was a really hard pregnancy on all of us, because of my rsd being so loud.

Since the birth its been hard too, to be awake for nightfeeds when my meds make me a zombie, or to carry her and do things for her like bath or change her, when I can't walk well, or use my arm or hand. My husband is a stay at home carer- I couldn't do any of this without him. So unless you have great support, its really hard, if not impossible. As Hannah gets bigger I won't be able to lift her, I can do it now but she's getting too heavy and big for me to do that for much longer (she's 4 months old now)

I had my Dr's ok for both pregnancies, and I was off my medications with the Dr's ok, and had home support for the things I couldn't do. If you can get all that happening, then go for it! If you need to stay on some meds, bear in mind that taking them in the first 12 weeks is very risky to the baby, and fairly risky the rest of the time. You have to ask yourself if you are happy to take those risks, one being the possibility of a disabled child, when we have so many disabilities ourselves. But hopefully you have a really supportive (and hands on) partner and support system to help out.

It is hard day by day, being a mum or being pregnant, in terms of pain and disability and your ability to function as their mother, but its BEING that mother that makes it all worthwhile!

This is just my experience, anyway! :p

Take care,

x Kate

Thank you Kate
 

Now I'm bawling my eyes out...and can't talk right now. I have to go pee and dry my eyes and reapply my mascara and then maybe...MAYBE I'll be able to respond. *sniffle*

Hugs
LisaM

(o Kate, how wonderful are you. Wot a sweetie,
atb)

Thanks :o

But I'm far from wonderful, I'm just a stubborn bugger who won't let RSD dictate what I can do in my life! ;)

So far I don't think I'm winning though, I think its a draw :p