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Reply
| | From:  Tami62 (Original Message) | Sent: 6/13/2008 4:52 AM |
From: Meredith_Anderson
(Original Message) Sent: 3/27/2006 9:33 AM
Hi,
I am 26 years old and have had RSD (CRPS Type I) for 3 years. My husband and I are concerned with
the future of our potential family: will we be able to have kids? I am nervous being on Neurontin and my
other medications while pregnant - but most especially the Neurontin. (I believe I could stop the other
medications for a short time, but I'm not sure about the Neurtontin.)
We haven't been able to speak with any doctors who could give us any answers. Does anyone out there
have any personal experience or know someone with RSD & pregnancy?
Thank you for your support!!
~Meri
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From: Courtney2631
Sent: 3/27/2006 6:35 PM
Well, I do. I have RSD and have had it for 4 years. My son is now 7 months old. I had to go off all of my
meds except my effexor. My son was born addicted to my effexor. It just took him two days to get it out
of his system and he was fine. I am still taking my effexor and I am breast feeding him. I would talk to the
doctor that prescribes all of your meds about pregnancy. It was hard at first going off my meds, but I got
used to it and I stop am not taking them...
Kara
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From: Meredith_Anderson
Sent: 3/28/2006 10:06 AM
Hi Kara,
Thanks so much for your input!!! Do you mind if I ask you which meds you had to go off of, and when?
Did you stop taking them before getting pregnant in anticipation, or did you go off of them when you
found out about being pregnant, or at 3 months, 6 months, etc.?
Obviously you survived being off of your medication - what changed in your life? Were you able to
continue working, socializing, etc.? Were you on bed rest as a result?
I have asked several doctors, but I still haven't received any answers. I greatly appreciate your
experiences!!!
Best,
Meri
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From: Courtney2631
Sent: 3/28/2006 11:06 AM
Hi Meri,
I went off my meds when I was 3 weeks pregnant. I didn't get pregnant on purpose so no I wasn't
anticipating it.
What changed in my life was my sleeping went back to nil, which happens after having a baby anyways.
I haven't worked since my accident that gave me the RSD, but at the time I got pregnant I was going to
school full time and their were times that I couldn't complete my homework on time. At times I wouldn't
be able to leave the house for a few days, because of the lack of sleep, but the baby was well worth it. I
guess you could say that it affected my sleep and that was about it. The effexor helps with the pain.
I was taking kolanpin and serquil. I paged my doctor immediately after discovering that I was pregnant.
He told me to stop taking them right away and I thought that he would give me something else to take
while pregnant and their wasn't anything else that I could take.
Oh, one thing that I did have a little bit of a problem with while pregnant was my RSD affected limb (my
left foot) swelled up something fierce. My right foot only swelled up a little bit, until about 6 days until I
had the baby. The swelling went down completely after having the baby.
You haven't received any answers from doctors, because they don't have experience with RSD and
pregnancy. My doctor and been in practice since 1980 and I was his first client that has RSD and was
pregnant.
Ask ask away. I don't mind any question that you might have. I would love to help if I can.
Kara
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From: Meredith_Anderson
Sent: 3/28/2006 4:23 PM
Hi Kara,
Thanks for answering my questions. Of course, I have a million more.
Would you go through your pregnancy again? Did being pregnant add to the RSD pain? On average,
what would you consider your pain scale number to be, from 1 being the least painful and 10 being the
most painful?
Why did you chose to breast feed instead of bottle feeding so you could go back onto your
medications? Have you been able to "get used to the pain"?
Since your son was born addicted to effexor, is he in any danger due to the addiction he had?
You said your left leg swelled up - could you take Advil to decrease the swelling? How did you manage
the swelling and pain during this time? Was there anything you found helpful in reducing the pain?
I guess you could say I am scared of going off of my medications. I'm afraid of the increased pain, as it is
already so bad. Obviously, if I were pregnant I wouldn't have a choice but to go off of the meds, I guess.
If I do decide to have kids and RSD, I would rather do it sooner than later. Do you wish you had your
son earlier, now that you've been through the experience? What do you think could have made the
experience easier?
Thanks!!!!!
Meri
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From: Courtney2631
Sent: 3/28/2006 5:31 PM
Hi Meri,
You bet I would go through the pregnancy again. I would also like to have another one. On the average
I would consider my pain to be at a 3 usually, but it can go up or down. Basically I fought this disease
with force and was able to reduce my pain levels a lot.
I chose to breast feed because I knew that I couldn't go back on my meds anyways. I was on small
doses, but it was still too much and I would never be able to get up as much as you need to with a baby.
I am with the baby's father and due to his occupation he is gone a lot so that leaves me to take care of the
baby most of the time(he is a pilot).
I don't think that I could really ever get used to the pain. My pain level used to be at a 10++++ and boy
was my foot discolored. I now take sonata so I can sleep and it is fast acting and I am still able to wake
up and take care of my son.
My son doesn't have any ill affects from being born addicted to my Effexor. He just was breathing really
fast after he was really jumpy. Other than that he was fine.
No I really don't wish that I had my son any sooner. Because my RSD pain was so bad that I was bed
ridden for months. I cannot even say the word "pain" with out crying unless I take at least 150 mgs of
effexor. If I stopped taking my effexor it wouldn't be such a good idea.
Oh no there was nothing that I could take to decrease the swelling. I have pictures of my foot, but I am
in the middle of a move so I can't get to them yet. The swelling was so bad that I had to have an ultra
sound done on it to make sure that I didn't have a blood clot. The doctors determine that it must be from
my RSD. I did get some compression stocks and that did help a little bit.
I didn't have any increased pain from the pregnancy. I will tell you one thing that I did to make my
experience better was to tell my OB doctor how I am with severe pain. I suffer from depression from the
RSD pain. I was worried about the pain from labor. I told her that I would like all of the meds I could
have right away, because I didn't want to suffer, because it scares me.
Well I had a C-section so I didn't have to experience and labor pain. I had a c-section, because my son
was breech and I had pre-clampsia.
Planning the child and going off my meds before becoming pregnant would have been a lot easier. I
wasn't addicted to my meds, because I was on such a small dose, but I relied on them to put me to sleep.
Kara
Keep them coming:)
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From: Meredith_Anderson
Sent: 3/28/2006 8:47 PM
Hi Kara,
Did you have to see any specialists while you were pregnant? Did any of the doctors suggest you stop
taking the Effexor, or worse, abort the pregnancy? Was your pregnancy considered "high-risk" due to
the RSD?
I also suffer from depression and am on a medication similar to Effexor called Cymbalta. I too am nervous
about the labor pains. If I have any additional pain (headache, toothache, etc.,) it is more than I can
handle along with the RSD. I'm scared to think of how bad the RSD and labor pains would be. What sort
of options did the doctors give you to ease your mind about the upcoming labor?
Were you able to carry your son full term? Did you experience any complications during your pregnancy
that you feel may have been due to your RSD?
I am so excited to have finally found someone who had a child despite their RSD. My hopes for the
future seem so much happier now that I know someone else was able to do it. Thank you so much for
sharing your experience with me - it means more than you could ever know!!!
Best,
Meri
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From: Courtney2631
Sent: 3/29/2006 11:28 PM
Hello Meri,
Nope, I didn't have to see any specialist due to my RSD. No, as a matter of fact my doctor told me that I
couldn't go off of the Effexor. No one suggested that I go off of it either. No one suggested to abort. It
wasn't a high risk because of my RSD. The only thing that I really didn't like was the swelling, but I
would do it all again and I plan too.
Well, I talked to my doctor and told her about how I was with pain. And I was balling like a baby when I
told her that I was afraid of the labor pain. She could see that I suffer from depression. Well she told me
that she would give me pain meds right away. Well, since I had to have a c-section I got to forgo that. A
c-section hurts afterwards, but it is not scary at all. And two of my friends had c-sections and didn't
have much pain at all. I can have another c-section next time if I want because I already had one. I told
my doctor already that is what I wanted. And I didn't have any pain after the c-section as long as I didn't
move. It really wasn't that bad.
I delivered my son to 38 weeks which is considered full term. 40 weeks is full term. I only had him a week
before my scheduled c-section. And that was because of the pre-clampsia.
I am very glad that I can help someone. I know exactly what you mean as far as the doctors can't give
you any information. I ran into that same problem myself.
Here is my personal email addy: [email protected]
I just don't want to offend anyone that might read this.
Kara
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From: mirage_angel_hope
Sent: 3/30/2006 7:47 AM
I want to thank you for this message as well I'm a little to young to have kids yt and need to find
someone who doesn't think I'm a freak.lol
But I am so glad to know that it is possible I don't know if I could ever do it because I'm on narcotics
and I don't know if those I would go off but you could go of your other meds it gives me hope.I want to
be a mother so badly but I think it would be hell on my body.
you have to be one brave women I admire you like you will never know.
love mirage
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From: fairchild7437
Sent: 3/31/2006 6:59 PM
For what it's worth--- I stopped Neurontin after taking it for 4 years. Just overnight-- no withdrawal or
anything. But of course, you should ask your doctor. I just wanted you to know it's possible.
Annie
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From: theMatrix777
Sent: 4/1/2006 2:08 AM
My husband took himself off neurotin cold turkey and it caused brain
seizures in him. So I would be very careful doing that. Please make sure and
talk to your dr.first. My husband didn't and paid a big price.
Trudy
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From: annie57011
Sent: 4/1/2006 4:41 AM
Hello,,,, the best thing You can do is research n search pharmacists,, n internet for the meds you are
taking.. Make sure that your drs.. Know about RSD,,,, know the correct treatment of... Lot of us has went
thru so many drs. that we feel like we are going thru carters pills... Lot of drs... really,,, finding a dr. that
you are comfortable with,, n knows the right treatment of... Having a baby with the meds. we take is risky
enough.. Without adding more too what we carry already.. Sure is no fun... I was off for a couple of
days again.. I hate it when our weather is bouncing... I feel like I am bouncing off the empire state
building when it goes like this.. I am also now going too a gastrologists this week So I maybe off for a
couple more days.. I have two appts. Wed. and also about 400 miles that day also.. This will be no fun
for me at all... One is for my urologists,, n the second one is gastrologists now there is something
wrong.. It been going on for too tooooo looonnnngggg. Hope this helps dear one.. talks soon.. loves
annie
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From: annie57011
Sent: 4/1/2006 4:52 AM
OOOOO,,,,,, my dear one,,, I am sooo sorry too hear about your hubby.. I went off neurotin rebelling
against my drs... None of it helped my pain.. Thank you LORD,, no adverse reactions happened.. I was
soo angry at time,,, I would not have known any difference.. Them there ones of neurotin n such makes
for some pretty badd other affects... I get soo angry,, they treat us like its all in our heads... We know
differently.. At least sounds like your on the right track now ... I hope treatment works well.. They finally
put in a morphine pump for me,, it is working well.. I go too get it turned up Friday again also.. It is been
well worth for me.. They are thinking that there is more too mine now than RSD.. We will see... I have 3
appts this week... Well over 500 miles too go this week also... Please take care. LET us know how things
are going.. I have so many appts.. I wonder if I am coming or going at all... [email protected]
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From: Lainey8055
Sent: 4/1/2006 7:38 AM
Hi Trudy,
I was on a very high dose of neurontin and stopped cold turkey and I had asked my doctor about the
possibility of seizures and she told me that was more likely to happen in someone who has a seizure
disorder or is taking the neurontin for the control of seizures. Just my experience, but I was concerned
myself about stopping the neurontin, maybe I was just lucky
Elaine
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From: rokky5
Sent: 3/3/2007 9:54 PM
Hi Meri,
My name is Doug, and I can tell you that aside from the regular pregnancy stuff, like morning
sickness, and frequent rest stops, that my fiance' said she hadn't felt that good in years. The pregnancy
seemed to send the RSD into some sort of remission or limbo, and she took no meds during the time she
was pregnant. The doctors say that some sufferers of chronic pain disorders will experience this.Our
daughter is 6 months old, and the RSD is creeping back. We are going to try hormone therapy soon. I
hope beyond hope that it helps her.
She decided to go off her meds, neurontin, and vicodin, during the pregnancy for the same reason you
are asking this question. No one could either confirm or deny a link to birth defects from neurontin. She
has had RSD in her hands, wrist and feet for the last 4 yrs. Hope this helps.
Doug
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RSD, WEATHER & PREGNANCY
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From: mamajama
(Original Message) Sent: 5/20/2008 6:52 PM
Hi all,
I have introduced myself before. But, I am 29, have RSD in my right hand/wrist/arm/shoulder/neck and
right half of my head. I am currently in my last trimester of pregnancy and live in southern California. My
question is: has anyone been pregnant with RSD? and if so did it change for you? What should I expect
during labor? Also, I have heard of many people talk about how the cold weather causes bad days. I am
having trouble with really hot days. It is 98 and humid. I hurt so much more cause I am swelling so much
more (cause of heat or pregnancy, not sure) then everyone has the air conditioning full blast which
causes a whole other wave of pain. I hate going any where cause I am hot, sweating and in miserable
pain and wearing half a sweater to shield my arm and neck from the a/c...and people then stare like "it's
hot as hell and she is wearing a sweater". I stay home as much as possible. But I am getting nervous,
how do I take care of a newborn! I have 6 weeks till baby time so any suggestions would be greatly
appreciated!
Peace, -Jama
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From: Courtney2631
Sent: 5/20/2008 7:21 PM
Hello Jama,
I had RSD in my left foot when I was pregnant. My son is now almost three years old. I didn't have too
many problems with the RSD and the pregnancy. Except I had pre-clampsia (high blood pressure) which
caused my legs and feet to swell really bad and that caused a lot of pain in my RSD foot, but other than
that I didn't have any problems. I was taking Effexor for my RSD at that time and I took it through my
entire pregnancy. When my son was born he was born addicted to my Effexor, but it wasn't a big deal
and it only took him a couple of days to get out of his system. The system of his addiction was that he
was just breathing a little fast.
My RSD today is completely gone and I don't know how it happened, but I am so glad that it did. My
doctor told me that it isn't so common.
Any question, just ask.
Kara
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From: stacenbill
Sent: 5/26/2008 9:21 PM
Jama,
I went through 3 pregnancy's after RSD being i got it was i was only 20. I had 1 miscarriage I'm
pretty sure not due to RSD and i carried 1 single child to term and the other was prego with twins which i
carried close to term 35 1/2 weeks which is pretty darn close especially for twins. My first prego the RSD
went into full remission and stayed that way for about 5 years then with my 2nd prego i noticed sighs of
it coming back but with carrying twins i wasnt sure well after they were born well they were about a year
old not only did my RSD come back full blown but also was left with Fibromalgiya however ya spell it as
well. My doc said was more than likely from the trauma of a multiple birth especially with already having
RSD. Just i know its hard to do when your prego but relax with it which will make the pain better but also
be better for your baby. As far as taking care of the little one you will learn to adapt very quickly to care
for him or her. Just remember you will need more rest so make sure you sleep when he does so that your
body can have the extra time to heal also if you have help this will be wonderful so that you can let your
body rest even more if you need it. Also if you plan to nurse your body releases oxytocin while he is
feeding which will make you tired and is a natural pain reliever so if there is a way for you to nurse i
totally recommend it. I have just as many problems with the high heat as i do with the extreme cold my
body cant figure out a good temp to be at on its own so i always have a sweatshirt or wear a t shirt and
take along the other because i never know which i will be so its better to be safe than in more pain. And
by golly if somebody wants to stare at me go right on ahead... stare away take a pic if ya need to heck i
might just pose. It sounds like you have a lot of stress and unanswered questions that you should jot
down and talk with your doc about so when the day does come for baby you will be better prepared. If i
can help in anyway just email me and i will do the best i can. [email protected]
I hoped this has helped some good luck to you with your new little one and please don't hesitate to ask
for help we are all here for ya!!! hugs,, stace
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