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-   -   Pregnancy and RSD (https://www.neurotalk.org/reflex-sympathetic-dystrophy-rsd-and-crps-/2612-pregnancy-rsd.html)

LisaM 10-03-2006 01:08 PM

Pregnancy and RSD
 
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

jewells 10-03-2006 04:57 PM

Hi Lisa and welcome. Just so everyone knows let me introduce you to Lisa. Lisa is from Braintalk 1. Diamond Lil and I seen Lisa's post on Braintalk 1 today and told her to come over here to ask this question because we knew Kate was here and posting.

I also have been in touch with Lisa during the down time of Braintalk so its good to see she found her way over to this site. I didn't know how to send her over here at first but today I figured it out, sorry Lisa its those damn drugs.

Once again welcome. Jewells

ATallOne 10-03-2006 05:41 PM

Welcome LisaM
 
I really can't help you with the pregnancy thing but personally it never was a issue for me. I think the blue, red, green, yellow, pink, orange and purple pills are all kicking in at the same time. WOW! look at all the pretty colors!

LOL! Just kidding! Seriously, make sure you check with your doc before you ever consider doing anything sexually! Chin Up!!!!

Mark :)

artist 10-03-2006 07:26 PM

Welcome Lisa, and well done J and DL for bringing you here. Our resident preggers gal will, I'm certain, be able to give you some advice, she pops in often, Kate on the OBT, Cake on this.

Yes, if memory serves, she has 4 small children and got through the pregnancies very well except for the last, recent one. Kate is also our resident ketamine expert having been through a few 5-day continuous treatments. So, she's a mine of information....but I'll clear off and make way for others who *do* know something about it!

BTW, although I never had kids (not planned, bad timing and the pill!) I completely understand the ticking clock thing. I finally gave pregnancy a chance at the age of 39 and guess what? Nothing happened :D No regrets!

Anyway, great to see you here,
all the best.

LisaM 10-04-2006 08:02 AM

Thank you all
 
hopefully the pros will be along soon. :)

allentgamer 10-04-2006 09:56 AM

I have 6
 
:eek: But they are all grown, and I think I am the wrong particapant lol. Just wanted to jump on and say hi! :D

Annie Poo 10-04-2006 02:17 PM

fentanyl, rsd, and pregnancy
 
Hi Lisa,

I'm a mom of two, and certainly understand how strong those maternal urges are.

I did a little quick searching, and found only generic warnings about fentanyl (Duragesic) risk during pregnancy. Sounds like the usual warnings for other narcotic pain relievers. Here's what WebMD said:

"Fentanyl should be used during pregnancy only if the benefits to the mother outweigh the risks to the fetus. Talk with your doctor before using fentanyl if you are or may be pregnant. This drug can pass through your body in breast milk and should not be used while you are breast-feeding."

Reading between the lines, this probably means that there probably hasn't been many incidents of problems due to fetal exposure, but that they probably don't have enough data to rule it out, either. My guess is that the animal toxicology studies during initial drug testing probably didn't show a lot of teratogenicity (i.e. causing mutations to fetuses) either. Usually the pregnancy risk description for drugs that cause significant problems to animal fetuses at relatively low doses (i.e. the doses humans would use) are very strongly worded.

I remember reading that many anticonvulsants DO have a history of causing significant problems with human fetuses when taken by pregnant moms. I don't have that data on hand (although I know that Tegretol is one that is potentially a problem).

I did a quick search at PubMed, and couldn't find any papers about the worsening or improving of existing RSD during pregnancy. However, I did find a reference to one review paper that summarized data about RSD diagnosed during pregnancy. Here's the reference and abstract:

Eur J Obstet Gynecol Reprod Biol. 1999 Sep;86(1):55-63.
Reflex sympathetic dystrophy in pregnancy: nine cases and a review of the literature.

"OBJECTIVE: To better understand the diagnosis of reflex sympathetic dystrophy of the lower extremities in pregnant women. SUBJECT: Disease analysis using a retrospective series of nine cases and a review of the literature (57 patients and 159 sites of reflex sympathetic dystrophy). RESULTS: This disorder should be considered in any painful pelvic girdle syndrome or lower extremity pain. The hip is involved in 88% of cases. Symptoms develop in the third trimester of pregnancy, between the 26th and the 34th weeks. Magnetic resonance imaging (MRI) provides an early, accurate, and very specific diagnosis, although standard radiography continues to be the first-line diagnostic tool. Fracture occurs in 19% of patients. The etiology and pathophysiology remain unclear, although pregnancy itself appears to play a significant role in this disease. Although locoregional mechanical factors partly explain reflex sympathetic dystrophy. Hypertriglyceridemia appears to be a risk factor. This disorder develops independently, but the conclusion of pregnancy appears to be necessary for cure. Reflex sympathetic dystrophy does not appear to affect the course of the pregnancy. Indications for cesarean delivery remain obstetrical and should be discussed when a fracture is involved. Simple therapeutic management using gentle physical therapy provides rapid and complete recovery in 2-3 months. CONCLUSION: Reflex sympathetic dystrophy during pregnancy remains poorly understood and underestimated. Only joints of the inferior limbs are involved. MRI appears to be the best diagnostic tool. Pathogenesis remains unclear. Fractures are not rare. Treatment should be non-aggressive"

I have the whole paper on a PDF file if you're interested.

Hope this is helpful, and good luck!
Annie

Annie Poo 10-05-2006 09:43 AM

from Medline Plus
 
Pregnancy—Although studies on birth defects with fentanyl have not been done in pregnant women, it has not been reported to cause birth defects

Annie Poo 10-05-2006 09:44 AM

something else from Medline Plus
 
Pregnancy—Although studies on birth defects with fentanyl have not been done in pregnant women, it has not been reported to cause birth defects. However, using any narcotic regularly during pregnancy may cause physical dependence in the fetus. This may lead to withdrawal side effects after birth. Also, use of this medicine near the end of pregnancy may cause drowsiness and breathing problems in newborn babies.

Annie Poo 10-05-2006 10:08 AM

paper-anticonvulsant risk during pregnancy
 
Neurology. 2006 Aug 8;67(3):E6-7.
In utero antiepileptic drug exposure: fetal death and malformations.

BACKGROUND: Pregnancy outcomes following in utero exposure to antiepileptic drugs (AEDs) are uncertain, limiting an evidenced-based approach. OBJECTIVE: To determine if fetal outcomes vary as a function of different in utero AED exposures. METHODS: This ongoing prospective observational study across 25 epilepsy centers in the USA and UK enrolled pregnant women with epilepsy from October 1999 to February 2004 to determine if differential long-term cognitive and behavioral neurodevelopmental effects exist across the four most commonly used AEDs. This initial report focuses on the incidence of serious adverse outcomes including major congenital malformations (which could be attributable to AEDs) or fetal death. A total of 333 mother/child pairs were analyzed for monotherapy exposures: carbamazepine (n = 110), lamotrigine (n = 98), phenytoin (n = 56), and valproate (n = 69). RESULTS: Response frequencies of pregnancies resulting in serious adverse outcomes for each AED were as follows: carbamazepine 8.2%, lamotrigine 1.0%, phenytoin 10.7%, and valproate 20.3%. Distribution of serious adverse outcomes differed significantly across AEDs and was not explained by factors other than in utero AED exposure. Valproate exhibited a dose-dependent effect. CONCLUSIONS: More adverse outcomes were observed in pregnancies with in utero valproate exposure vs the other antiepileptic drugs (AEDs). These results combined with several recent studies provide strong evidence that valproate poses the highest risk to the fetus. For women who fail other AEDs and require valproate, the dose should be limited if possible.

LisaM 10-05-2006 10:09 AM

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 :)

Annie Poo 10-05-2006 12:05 PM

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.

LisaM 10-05-2006 01:38 PM

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

Annie Poo 10-05-2006 02:14 PM

from science geek
 
Hi Lisa,

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

Annie

Cake 10-08-2006 03:30 AM

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

Cake 10-09-2006 06:38 AM

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

LisaM 10-09-2006 11:58 AM

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

artist 10-09-2006 01:08 PM

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

Cake 10-09-2006 06:34 PM

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


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