[nopainever]

Hi everyone:

I have RSD in both my rt. foot/leg and lft. foot/leg. My RSD started in just my rt. foot and slowly started spreading throughout the leg. I have had 26 Lumbar Sympathetic Blocks and 1 Spinal Cord Stimulator Trial. After the SCS Trial I realized the RSD had spread to my lft. foot/leg. It is exactly the same now on both sides. It is horrible. I also suffer from insomnia.

My doctor has me on: Duragesic Patches 75mg - 1 every 48 hours, Morphine Sulfate IN 30mg - 1 every 6 hours, Topomax 100mg - 1 @ bedtime, Valium 10mg - 1 every 6 hours, Klonopin 1mg - 2 @ bedtime.

I just found out 3 days ago that I am pregnant, 6 weeks. I called my Pain Dr. to tell him because we had just scheduled 9 Lumbar Blocks for the month of May and I had to cancel them, and ask him about my meds. He told me to find an OB/GYN and see what they will allow me to take. I called around the Las Vegas area to find the best OB/GYN, since I am new to the area and told them my situation. The earliest they can get me in is the 27th for an ultrasound and the 30th for a consultation to talk about the US and the meds. I can't wait that long being that this my 1st tri-mester and most critical phase for the baby.

So, I started researching the meds myself. I found out Valium and Klonopin could cause "floppy baby" syndrome. So, I stopped those immediately. I stopped the Topomax also because I read horrible things on anti-sezure meds and pregnancy. I read up on my MSIN and Duragesic and they seem to be okay except for the fact that the baby could be born with a dependency.

I need some advice. Is anyone familiar with this? Or, has anyone had a child while having RSD? I would love to know your story. I have never had a child and my fiance and I are so afraid that we may lose it. We want to take every precaution that we can.

Thanks for any advice and information!

[Jomar]

I found a few sites with mention of it.

http://www.aboutrsd.com/pregnancy-and-rsd.htm
http://www.rsdrx.com/rsdpuz4.0/puz_7.htm
http://www.rsdrx.com/rsdpuz4.0/puz_141.htm
http://www.rsdinfo.com/rsdandpregnancy.htm

google results list-
http://www.google.com/search?hl=en&q...=Google+Search

[Vicc]

Hi nopainever.

You don't know me and have no way to judge how much of what I say is real, vs blowing smoke. I can say that bullshitters usually find a cool reception here, and that I came here at the same time that a lot of others came over after the collapse of our former RSD site, and most people seem to like me. That's a good clue that I'm probably not a BSer.

I have studied RSD and neuropathic pain extensively, plus read nearly every post on this forum and at BrainTalk for the past nine years or so. Several members have reported being pregnant over the years and most of them have said they were able to stop using opiates without experiencing excruciating pain.

I recently watched a lecture on pain in women, and plan to watch it again in a little while so I can talk with some certainty about what was said, but the gist of it, regarding pregnancy and pain, was that hormones released during pregnancy had a dramatic effect on reducing pain.

This certainly corresponds with the reports of pregnant members here.

Opiates are not very effective against RSD pain anyway, so stopping them may not cause the problems you expect and fear. GABAergic drugs, like Gabapentin, Gabatril, Lamictal and Lyrica do moderate RSD pain, and I plan to write an article on how they work, but this isn't the time.

I suggest you talk to your doc about the potential risks of GABA drugs during pregnancy, and I'm betting that others; especially Kate (Cake) will be posting here to talk of their experiences and what they learned about these drugs and pregnancy.

I'm gonna stop for now, but I'll post again after reviewing that lecture. Others will certainly give you information, encouragement and support. For now, try to avoid "awfulizing" whats going on; I suspect that the reality is better than the pictures and scenarios going through your mind right now.

I can say without hesitation that if you have to have RSD while you're pregnant, you got lucky! You found the best RSD site and the best RSD people in the world, right here. Talk about good timing.

I believe in love at first sight, so I'm sending you my love and my prayers that your pregnancy will be a happy (under the circumstances) experience and your child will be healthy and happy...Vic

[nopainever]

I appreciate this info. I have seen most of it, but one article that speaks of Fentanyl. That is the patches that I am on. I don't know if I should rip it off or what? Then I start going into WD. I am so confused and scared. I do not want to hurt this baby.

[dolphin]

I've had RSDS for 13 years, now total body. I've had 3 beautiful baby girls in the past 10 years. My pregnacies went great, vicc is right, my pain decreased with the pregnacies, but came right back after delivery. I stopped all my meds in the first trimester of each pregnacy, but my doctor told me after that I could go back to my meds. My youngest is 3 months old and my oldest is 12 years old. The biggest problems is getting around, bending, lifting, but good news is my 12 year old is a big help. Good luck

[Jomar]

Does your insurance have a nurse hot line?
or the local hospital?

Gosh I would think an OB/GYN or a hospital should be able to give you some sort of answer on this.

You might call and ask if any cancellations could they fit you in sooner?

[nopainever]

Vic, I am teared up at the moment. You made me feel a lot better. I can't even explain the horrible thoughts and dreams that I have about my pregnancy and the thought about how bad my RSD can be afterwards.

Narcotics have worked the best for me, along with topical compounds and Lidoderm Patches. But, I have heard that the body will release chemicals and endorphins when pregnant, so I will pray that I am one of those people.

I can't take Lyrica or Neurontin because they make me sick and so do most other meds that I have tried (which is basically everything). Also, I have severe insomnia. What would you suggest for sleep since I will not be taking Valium or Klonopin?

Thanks again,
Heather

[nopainever]

Originally Posted by jo55

Does your insurance have a nurse hot line?
or the local hospital?

Gosh I would think an OB/GYN or a hospital should be able to give you some sort of answer on this.

You might call and ask if any cancellations could they fit you in sooner?

My Ob/GYN knows my situation and still can't fit me in. I can call my insurance company and see. I have Cigna PPO, It's AWESOME!

Thanks again,
Heather

[nopainever]

Originally Posted by dolphin

I've had RSDS for 13 years, now total body. I've had 3 beautiful baby girls in the past 10 years. My pregnacies went great, vicc is right, my pain decreased with the pregnacies, but came right back after delivery. I stopped all my meds in the first trimester of each pregnacy, but my doctor told me after that I could go back to my meds. My youngest is 3 months old and my oldest is 12 years old. The biggest problems is getting around, bending, lifting, but good news is my 12 year old is a big help. Good luck

Thanks so much for writing back to me. I have a couple more questions for you? I have been on such high doses of narcotics for so long, I can't just quit taking them. They are the only thing that helps me with the pain. Since I found out I was pregnant, I have had 50% more flare-ups. Not sure if it's stress or my bodies hormones.

Also, your kids all came out okay? No problems? What meds were you taking and what dosages?

Sorry I am asking so many questions....

Thanks,
Heather

[Vicc]

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