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Reflex Sympathetic Dystrophy (RSD and CRPS) Reflex Sympathetic Dystrophy (Complex Regional Pain Syndromes Type I) and Causalgia (Complex Regional Pain Syndromes Type II)(RSD and CRPS)

PREGNANT and MEDS...HELP!!!

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Unread 04-23-2007, 03:53 PM   #11
nopainever
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Originally Posted by Vicc View Post
Hi again Heather.

First, I had to stop taking Neurontin because my eyes stopped focusing on the same place. The first time it happened it was really interesting: suddenly I was looking at two different parts of the road at one time, and the road my left eye saw was about a foot higher than the one my right eye saw. I was afraid I was gonna run into the higher part.

I didn't like gabatril either, but didn't notice any side effects at all with Lamictal. If you decide to keep looking, good luck.

It just happens that I was a pscchiatric social worker and certified substance abuse counselor before I became a crochety old man. Take your finger off the panic button, kiddo, all those things we're all read about birth defects and addicted babies only represent the very worst possible outcomes.

The women who delivered those babies were MAJOR substance abusers, spending every penny they could steal on drugs. They smoked enough crack in one day to put three normal women in the morgue. Same about heroin and coke. The chance that the small amount of meds you have taken since you got pregnant is going to hurt your baby is about the same as the chance that I'll get lucky tonight.

Neither you or my wife have anything to worry about.

I remember that several teens were admitted to our nuthouse while pregnant and abusing drugs. We didn't have the funding to run any studies, but drugs, pregnancy and birth weights were the topic of many discussions among staff. Since these girls didn't get to take drugs while they were our guests, we were able to put together some pretty good guestimates about birth weight, and those fell right into the average for deliveries in our county.

I am too professional to claim that the drugs you took didn't hurt your baby, but I do get to say that if this had happened to my wife I would have been reassured by facts that I learned later. I would have been apprehensive, but would have not lived in fear of what we would see when our baby was born.

I don't lie to make people feel better, I calls em like I sees em, and I promise you that the reality will be lots better than what you're afraid will happen...Vic

Oh. yeah, about the sleep thing: I can't remember the last time I slept more than three hours. If you find something that works, let me know...Vic
Vic,

I feel like I can breathe now. You had me in tears to laughing. Who does that? Especially someone you don't know, that takes the time out of their day to reach out and make someone else's day (or pregnancy) a lot easier. I admire what you do for people. You just changed my stress level from an 8 to 4 in matter of minutes.

Also, I am glad that I found this RSD site that is active. I saw an old site, this one, but you couldn't reply or register or anything. But, somehow I found you. Thanks for the guidance and STRENGTH. I am gonna keep asking ???? Hope you don't mind.

Blessings,
Heather
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Unread 04-23-2007, 05:28 PM   #12
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just a thought....

Try calling your pain doc and have THEM call the OB/GYN. Often doctors can get you in to other doctors much quicker than they will see you if you call yourself. If you tell the pain doc you found an OB that will take you...give them the date of the appointment you have made...and ask if they will call for you to see about moving the appointment up. He/she could well speed things along for you. If this does not work, call the OB back and ask if they have a cancellation list that you can get on. That way, if anyone cancels an appointment you might be moved up. If you can go in any day any time without much notice - tell them that. Might help move you up the cancellation list.

Good luck to you!
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Unread 04-23-2007, 08:29 PM   #13
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Originally Posted by daylilyfan View Post
just a thought....

Try calling your pain doc and have THEM call the OB/GYN. Often doctors can get you in to other doctors much quicker than they will see you if you call yourself. If you tell the pain doc you found an OB that will take you...give them the date of the appointment you have made...and ask if they will call for you to see about moving the appointment up. He/she could well speed things along for you. If this does not work, call the OB back and ask if they have a cancellation list that you can get on. That way, if anyone cancels an appointment you might be moved up. If you can go in any day any time without much notice - tell them that. Might help move you up the cancellation list.

Good luck to you!

Thanks for your advice.
My Pain Clinic is so unorganized. I go to a sister location to the mother location, where are the calls are placed, surgeries are scheduled, etc. I am only 3 days away from my ultrasound and I see my OB on MON for the consultation and results of the US. By the time that they get all my info squared away at the Pain office, I will be on having my second child.

I just see and read all these horror stories about the first trimester. So, I am scared. It's my 1st child and having RSD is stressful enough. Man, WE are strong aren't WE?

I will let you all know what the dr's advice was..

Thanks,
Heather
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Unread 04-23-2007, 08:54 PM   #14
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Hi Heather

Vic, you were right, I found my way in here!

I've had two pregnancies since my rsd started, but also had two children before then. When my rsd started Bailey was 2 and Olivia was only 7 months, so in a way I've dealt with three babies since rsd.

For my pregnancy with Dayne (3rd baby, 1st rsd baby) we planned that and I was off all meds. We knew that while I was fairly stable it was the best time to try for the 3rd child we really wanted, as we knew the future was uncertain. I had a remission of pain from about ten weeks onwards, it was great! The first few weeks were really hard and many times I found myself crying from pain, desperately wanting pain relief but knowing it would be risky to have some. Somehow I made it through that (thinking about my little baby did the trick!) and the pain went down to basically nothing for the rest of the pregnancy. The only time I had trouble was in the last few weeks, when the fluid build up caused swelling in my rsd arm and hand. Within hours of Dayne's birth though, my rsd was back. I started back on tramal within a week (just took shortacting pain meds until then) but had an allergic reaction to it so had to start on other meds.

With Hannah, I was already in a type of remission following a ketamine infusion, so we planned that one too- trying to push our luck and get one more bub! lol I had some small flareups but was otherwise ok, until the five month mark when I was bitten on the leg by a nasty spider and my rsd travelled to there. That flared up my arm and started it all over again. It was VERY difficult being pregnant with high rsd pain, as paracetemol just didn't hit it. I eventually relented and my dr prescribed panadeine forte for the really bad times. It's ok to take every now and then, but I made sure I didn't take it after the 34 week mark, so that by the time she was born she didn't have any drugs in her system.

I know that some dr's say some meds are ok in the last trimester (including some antidepressants), though you may have to wean off them before birth, or if you are able to stay on them the baby will have it in their system for the first few weeks, so might be extra sleepy etc. I really thought my pregnancy with Hannah would be the same as the one with Dayne, but it just wasnt, and that was hard.

Hannah is now ten months old and just gorgeous! Dayne is almost five. As difficult as it was, they were both SO worth it!

You're right though, its best to limit the medications you take in the first trimester as thats when all the important development takes place and some medications may impact on that.

Be aware that you'll need a lot of physical support after the birth too. I couldn't breastfeed either baby as I couldn't have anything touch my right arm or hand so could only hold her on my left side, so I bottlefed them from day one. Bottlefeeding also meant that I could take medications again without affecting the baby. One drama after the birth is balancing your medications with the needs of your baby. Some meds make you sleepy all night, but thats no use if you have to wake up every 3-4 hours, for an hour, to feed your baby. Changing nappies one handed is a struggle, so is bathing, so is getting the stroller out of the car one handed, or dressing a baby thats trying to crawl away from you... but its all doable! Everything's doable if you want it enough, regardless of rsd! And as I said, its SO worth it!

Anyway, I wish you all the best with your pregnancy! I sincerly hope that you are one of the lucky ones who doesn't have rsd pain during your pregnancy.

There's nothing better than to be able to look at your newborn baby and be proud of yourself for what you've done, and to laugh in the face of RSD! lol

Be careful coming down off your meds, as much as you want it out of your system, don't rush it more than you should. There's a great website I found at www.safefetus.com - on there you can search different drugs and it tells you the known risks during pregnancy and breastfeeding. Its really easy to follow and very informative, so that might be worth checking out too!

I hope my story helps somewhat.

x Kate
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Unread 04-23-2007, 09:34 PM   #15
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Originally Posted by Cake View Post
Hi Heather

Vic, you were right, I found my way in here!

I've had two pregnancies since my rsd started, but also had two children before then. When my rsd started Bailey was 2 and Olivia was only 7 months, so in a way I've dealt with three babies since rsd.

For my pregnancy with Dayne (3rd baby, 1st rsd baby) we planned that and I was off all meds. We knew that while I was fairly stable it was the best time to try for the 3rd child we really wanted, as we knew the future was uncertain. I had a remission of pain from about ten weeks onwards, it was great! The first few weeks were really hard and many times I found myself crying from pain, desperately wanting pain relief but knowing it would be risky to have some. Somehow I made it through that (thinking about my little baby did the trick!) and the pain went down to basically nothing for the rest of the pregnancy. The only time I had trouble was in the last few weeks, when the fluid build up caused swelling in my rsd arm and hand. Within hours of Dayne's birth though, my rsd was back. I started back on tramal within a week (just took shortacting pain meds until then) but had an allergic reaction to it so had to start on other meds.

With Hannah, I was already in a type of remission following a ketamine infusion, so we planned that one too- trying to push our luck and get one more bub! lol I had some small flareups but was otherwise ok, until the five month mark when I was bitten on the leg by a nasty spider and my rsd travelled to there. That flared up my arm and started it all over again. It was VERY difficult being pregnant with high rsd pain, as paracetemol just didn't hit it. I eventually relented and my dr prescribed panadeine forte for the really bad times. It's ok to take every now and then, but I made sure I didn't take it after the 34 week mark, so that by the time she was born she didn't have any drugs in her system.

I know that some dr's say some meds are ok in the last trimester (including some antidepressants), though you may have to wean off them before birth, or if you are able to stay on them the baby will have it in their system for the first few weeks, so might be extra sleepy etc. I really thought my pregnancy with Hannah would be the same as the one with Dayne, but it just wasnt, and that was hard.

Hannah is now ten months old and just gorgeous! Dayne is almost five. As difficult as it was, they were both SO worth it!

You're right though, its best to limit the medications you take in the first trimester as thats when all the important development takes place and some medications may impact on that.

Be aware that you'll need a lot of physical support after the birth too. I couldn't breastfeed either baby as I couldn't have anything touch my right arm or hand so could only hold her on my left side, so I bottlefed them from day one. Bottlefeeding also meant that I could take medications again without affecting the baby. One drama after the birth is balancing your medications with the needs of your baby. Some meds make you sleepy all night, but thats no use if you have to wake up every 3-4 hours, for an hour, to feed your baby. Changing nappies one handed is a struggle, so is bathing, so is getting the stroller out of the car one handed, or dressing a baby thats trying to crawl away from you... but its all doable! Everything's doable if you want it enough, regardless of rsd! And as I said, its SO worth it!

Anyway, I wish you all the best with your pregnancy! I sincerly hope that you are one of the lucky ones who doesn't have rsd pain during your pregnancy.

There's nothing better than to be able to look at your newborn baby and be proud of yourself for what you've done, and to laugh in the face of RSD! lol

Be careful coming down off your meds, as much as you want it out of your system, don't rush it more than you should. There's a great website I found at www.safefetus.com - on there you can search different drugs and it tells you the known risks during pregnancy and breastfeeding. Its really easy to follow and very informative, so that might be worth checking out too!

I hope my story helps somewhat.

x Kate
Kate,

Thanks for taking the time to write to me. I am definetly going to check that website out. What kind of damage are we talking about here? I feel so bad that I am taking my meds, a lot less now, and you weren't taking anything. My RSD is so bad that I cannot shower without a flare-up. I have it in both feet and legs, to about 5 inches above my knee. I am miserable!

I just want to cry! I am so stressed out right now. I don't want my baby to be deformed or be born with a dependency. I am going to check out your website that you gave me and see what to do.

Thanks so much! I am so proud of you for being so strong and doing it an your own. You are my inspiration!

Thanks Kate,
Heather
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Unread 04-23-2007, 10:28 PM   #16
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Heather,


You will be in my thoughts and prayers!!!!! You can do it!!!!!!
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Unread 04-23-2007, 11:02 PM   #17
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nopain
My first thoughts would be to have the pain doc take on a detox to lower what he can of medications and then start from scratch with consult with OB GYN.
Likely OB is going to detox anyway, There is a point where the patient care outweighs the risk to the child....for example if psych meds are needed.

My DIL took Effexor with no problems during her pregnancy, but we often wonder if that is the reason for the stomach protuding the diaphrahm, He had reflux real bad as a baby. He will have surgery to repair in a few months.

I had foot surgery and xrays of the foot after surgery when I was several days to ten days pregnant, with opiats and anesthsia but my baby was fine.

When my friend had chronic pain syndrome she experianced as most expecting mothers do the effect of the bodies natural pain release of endorphins, the relaxing of muscles form chemical release in the body to lossen joints all played a part in becoming natural pain reduced to no medications.

If you had a pain pump istead of SCS that helps too. is the scs in the belly or back?

Congrad's and enjoy the experiance.
Dianne
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Unread 04-23-2007, 11:12 PM   #18
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Hi Their,

If I was you I would find a OB-GYN that specalizes in High Risk pregnancies right away. They usually are more knowledgeable.

Let's hope your pain levels go down like Kate's. Hugs, Roz xxx
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Unread 04-23-2007, 11:44 PM   #19
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nopain
My first thoughts would be to have the pain doc take on a detox to lower what he can of medications and then start from scratch with consult with OB GYN.
Likely OB is going to detox anyway, There is a point where the patient care outweighs the risk to the child....for example if psych meds are needed.

My DIL took Effexor with no problems during her pregnancy, but we often wonder if that is the reason for the stomach protuding the diaphrahm, He had reflux real bad as a baby. He will have surgery to repair in a few months.

I had foot surgery and xrays of the foot after surgery when I was several days to ten days pregnant, with opiats and anesthsia but my baby was fine.

When my friend had chronic pain syndrome she experianced as most expecting mothers do the effect of the bodies natural pain release of endorphins, the relaxing of muscles form chemical release in the body to lossen joints all played a part in becoming natural pain reduced to no medications.

If you had a pain pump istead of SCS that helps too. is the scs in the belly or back?

Congrad's and enjoy the experiance.
Dianne
This is very helpful information. I will just have to wait and see what will happen on Monday woth the OB and then consult with my Pain Dr.

I am only 26 years old and didn't want the SCS or pump. But, my dr. was making me feel like I was running out of options. So after a couple months I decided to go for the trial, and after having the SCS trial my RSD spread. I didn't want to risk the surgical procedure of the pump to risk it spreading anymore. The SCS is placed in your back on the left side (control devive), then the wires run from there up into your sympathetic area next to your spine. I hated it! The feeling drove me insane and aggravated my RSD.I don't know how anyone with RSD says that more tingling, pins and needles, and vibrations "feels good". A lot of people like it. I posted some pics for you.


Thanks again!
Blessings!
Heather
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Unread 04-23-2007, 11:47 PM   #20
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Hi Their,

If I was you I would find a OB-GYN that specalizes in High Risk pregnancies right away. They usually are more knowledgeable.

Let's hope your pain levels go down like Kate's. Hugs, Roz xxx
Do you think that RSD is considered a High-Risk pregnancy if my pain stays horrible. It has gotten worse since I found out that I was pregnant.

Thanks so much for your suggestion!

Blessings!
Heather
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