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posted
Hi,

I just wanted to offer up my ear to anyone who is looking to get pregnant or is pregnant, or a new mom. I just had a baby a month ago, and when I was researching and planning how I'd do it being a chronic pain patient I found very little out there in the way of support. So I just wanted to make myself available in case there is anyone else in that boat.

ALso, I'm a new mom now, and would love to chat with other new moms who are in pain also if you are on the boards!

Nicole
 
Posts: 99 | Registered: 03-20-2007Reply With QuoteReport This Post
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Hi Nicole!

Thanks for offering your support. I just had a pain pump in and one of the reasons why I made that decision is because I want to start having kids. I am really concerned with pain so I'm sure I will have plently of questions for you in the near future. How was the pregnancy and your pain level?
 
Posts: 26 | Registered: 02-20-2007Reply With QuoteReport This Post
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Hi Jos33 -

I actually have a long post about my pregnancy experience written up for my shareposts but haven't put it up yet. I will soon!

But basically, my pain during pregnancy was the up and down. I was fortunate that it could have been a lot worse, the doctors expected it to, I expected it to. In the beginning when I found out I was pregnant I was still in the process of lowering some of the doses of meds I knew I'd have to lower. But I think the whole news of finally being pregnant (I had fertility problems too) was so motivating I didn't care how much pain I was in! Once I settled into the idea, and into my doses of meds that I'd remain on during the pg, then the pain levels went back up a bit. Nothing extreme most days, I still held a full time job until 7 months (which was one of the hardest parts and I think incresed my pain a bunch), but at 7 months (the end was the hardest part pain wise for me) I was put on modified bed rest and lowered my hours to part time for a month, then I went on maternity leave soon thereafter. My daughter Lucy is going to be 2 months old next week (god that went by fast)!

I think it's great you're going to go for it. Congratulations! So many people write me lately and tell me how they aren't sure they will try now because their pain has been in the way. I think your pain is definitely a factor, but it doesn't have to rob us of the chance of having babies (for most of us anyway.. I know for some it physically does). This is the best experience in the world... and even though lately I'm in more pain than ever with a newborn, no sleep, bending and lifting all the time, etc... I have the biggest grin and my heart is full. It's amazing bringing a little life into the world!

Do you have a supportive doctor who will stand by you thru the pregnancy? Do you have a pain doctor and OB that can work together on your care? What about family.. is your husband supportive of you?
 
Posts: 99 | Registered: 03-20-2007Reply With QuoteReport This Post
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Hi Nicole!

It's great to hear you say how worth it everything is. I naturally worry about how much pain I'll be in but I am really getting the "itch" and feel like it's time. My husband and I have been together for 8 years (married for 3) so we've had time to build a strong relationship. He has been amazing and had dealt with my pain from the beginning. I actually met him a few months after my first back surgery. I wouldn't have been so strong without him. I hope you have the same support?
Through trial and error I have found an amazing pain doctor and luckily my primary physician is also my obgyn so I'm in good hands.
I have actually thought that maybe the joy of motherhood would ease the pain and you have confirmed that possibility! I hope I'm not getting too personal but are you thinking of upping your meds when Lucy is a bit older?
Thanks again for all of your encouragement. I would love to keep contact when I travel down that road. (hopefully soon Smiler). I do hope your pain gets better though. It can wear you down and I can't imagine how exhausted you must be.
 
Posts: 26 | Registered: 02-20-2007Reply With QuoteReport This Post
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So glad to hear you have great doctors, and a supportive husband. I think that makes a world of difference. I have talked to so many women about this and you would be shocked at the number who have doctors that turn their backs on them as soon as they get pg. They just don't want anything to do with medicating a pregnant woman! There aren't many that are educated in it. I was so fortunate to have a team that supported me, and stood by me. Even in the hospital it was a nightmare because of the lack of education. The nurses didn't understand how I could need more medication than the average c-section patient, and they'd lecture me on anything they felt I was doing wrong. It was very difficult. Are you going to need a cesarean too because of your back?

Yes, my husband is also a supportive one. I am very fortunate there too! Right after we got together I had trauma to my jaw that made the pain level skyrocket and ended up being the beginning of this pain that I have now. He's stood by me while we've gone to specialist after specialist, had surgery, tried numerous treatments and meds, etc.. During the pregnancy he went to almost every appointment, and we saw specialists for the pregnancy too. I was automatically considered a high risk pg because of the meds, so there were many appointments.

Sadly, you should also be prepared for the looks and comments and ignorance that you'll encounter along the way of those that don't understand chronic pain at all. We see it all the time now in our lives, but when you're pregnant it adds a whole new dynamic!!

It sounds like you're doing all the right things in preparing and that's wonderful. It isn't easy at all, I won't lie, but it's the most amazing experience a woman could ever have. And since I've achieved this while having pain, I feel so proud of myself. I worried the entire pregnancy, as you probably will too, but all of it was for nothing as Lucy is healthy and happy.

As for your question, yes actually if the pain continues to be on these high levels, then I'm going to have to increase my dosing again. I'm still on very little b/c I wanted to breastfeed. So if I increase my meds I have to likely stop breastfeeding and I'm not ready to. It's going to be hard for me for many reasons to stop.. mostly because I feel the pain is giving me a deadline, not my own body. That's another subject we could go on and on about. So I'm just trying to push thru the pain right now as best I can on the meds I do take, and stick it out as long as I can. I know in my heart that soon I'll need to increase them b/c I'm no good to my daughter if I'm in pain. I never thought breastfeeding would be so emotional, but it is... I didn't think I'd be attached to it, but I am. It's another one of those things about having a baby that you just can't plan or truly know how you'll feel until you go through it yourself.

I'm very happy for you and hope you get pregnant quickly and easily and that you are well on your way to becoming mommy soon! Smiler I'm here if you need anything!

Nicole
 
Posts: 99 | Registered: 03-20-2007Reply With QuoteReport This Post
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Hi guys,
I was so excited to find posts about this, you are right about the lack of info out there. I'm not pregnant now, we are just talking about it at this point & trying to learn how it works with chronic pain and everything I will need to do before we can try. I have talked about pregnancy with my pain dr in the past but only briefly but I am thankful that she brought it up and made it clear that pain meds don't mean I can't have healthy babies so I know she won't abandon me! Although it will be a while before we start trying I have a lot of questions, especially about meds - tapering down, how long it takes, etc so I would love to hear about your experiences. Its one thing for a dr or book to give info but as we all know no one can really understand chronic pain until they join the club! I'm sure that's true of being a mom too Smiler

Lacy
 
Posts: 2 | Location: Texas | Registered: 04-26-2007Reply With QuoteReport This Post
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Lacy, I've gone through all of it... feel free to message me anytime with your questions. I'm happy to share my experience.

Nicole
 
Posts: 99 | Registered: 03-20-2007Reply With QuoteReport This Post
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Hi everyone-

I can't tell you how happy I am to find such a great conversation about chronic pain and pregnancy.

I am not pregnant yet, but we are trying. We need to use IUI for pregnancy due to my husband's limitations, but in addition to that complication, I am have chronic neck and back pain.

I have had surgery on my neck for disk herniation, and I have a thoracic herniation as well as two lumbar herniations. I have been told that pregnancy is definitely doable while in chronic pain, but I can expect to be on bedrest early.

I am so worried about being able to hold my baby, nurse the baby, and even just look at the baby without being in major pain.

Any support or advice is much needed.

Thanks,
Kari
 
Posts: 7 | Registered: 05-03-2007Reply With QuoteReport This Post
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Hi everyone:

I am so glad that I found this forum. I am pregnant 7 weeks, and I have RSD. I am currently taking 75mg Duragesic Patches and 30mg Morphine Sulfate pills. I have already discontinued Valium, Klonopin, and Topomax because of what I have read on the internet. I have a great pain dr and OB that will be working together on this. I am concerned about my pain meds. I cannot get off of them, I am in all over body pain. I am only 26 years old also. My OB is happy that I stopped taking the meds above and really didn't say anything about the meds that I am taking.

Is there anyone that can help me out on this? I am worried about my baby and do not want to cause any harm. Any advice would be so appreciated. Thanks, Heather
 
Posts: 6 | Registered: 05-04-2007Reply With QuoteReport This Post
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Hi Heather-

Congratuations on being pregnant, that's wonderful!

It sounds like you are in good hands with your OB and Pain Dr. working together. I am still in search of that combination of people. I found a gret OBGYN, so I'm happy with that. I've had 3 pain doctors now, they are ok, but just ok. So ,it's frustrating, I never get a clear cut answer on the pain meds question. If anything, they all say that I need to get completely off of them, and that there really are no safe options for me.

So, I'm curious about your pain doc, sounds like they have been able to come up with a solution that works for you, that's great. I would push your OB on the issue, make sure that he/she gives you their opinion and that's it's based on medical studies. You need to feel good about what you are doing, and that means getting the solid advice from your OB.

Hang in there.
Kari
 
Posts: 7 | Registered: 05-03-2007Reply With QuoteReport This Post
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My Pain Dr now wants be to be on Nothing At All. I cannot do this. My body is going crazy! I need to be on something. I have been doing soooo much research on drugs and it seems like the Duragesic Patch is okay if I have already been on it for a prolonged period of time.

I am so scared and hurt. I do not know what to do.
 
Posts: 6 | Registered: 05-04-2007Reply With QuoteReport This Post
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Heather-

You might want to check out a website called the Teratology Society. The website is www.teratology.org.
I called this place and reviewed all my meds with them, and they gave me the straight answer on all of them. They are very well informed, and they can also speak with your doctor if you have further concerns.

I know how you feel, and I'm not even pregnant yet. I'm scared how it's going to feel to be off my meds, and then in addition to that, the pain of pregnany. But, I know you've heard it a million times, but your sacrifice will bring you the most wonderful thing in the world...a baby!

Kari
 
Posts: 7 | Registered: 05-03-2007Reply With QuoteReport This Post
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Heather,

My pain doc was OK with me staying on the patch of I wanted to, but I chose not to (personal decision). I figured I'd try it without and if I needed to go back I could, and I didn't need to. I really hope you find a pain doctor that is commited to helping you through this. I would also try and see a maternal and fetal medicine specialist.. usually they only see high risk pregnancy patients, but b/c I am a chronic pain patient I was considered sort of "high risk" and got to go see one of these docs. It put my mind at ease about everything I was on, what I could do and couldn't do, etc.. it was fabulous. I was lucky that if my pain doc or OB/GYN didn't know the answer they would find it for me by referring me to someone who did. Hang in there.. there IS a way. There is no reason why you can't take some medication, it's just a matter of getting the safest ones at the lowest doses possible for you. Remember, most websites or medication info will tell you not to take while pregnant and it usually is simply a case where not enough research has been done to tell you otherwise, so they take the safe road, which is great, and advise women who are pg to stay off meds. However, educated doctors will be able to tell you which meds are indeed clearly unsafe (with research to back it) and which meds are just too new, etc. to know.

Feel free to message me anytime if you need support.. I just went though this. I'm not a doctor but I'll be happy to share my experience with you. My daughter is now almost three months old and she is healthy as can be!!

Best,
Nicole
 
Posts: 99 | Registered: 03-20-2007Reply With QuoteReport This Post
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Hi, Nicole. Congrats on your healthy baby!

I would love to talk with you. I tried to get your email address to write you in private. I didn't have access. I just joined this board after googling chronic pain patients and pregnancy and reading your post.

I'm 6-weeks pregnant. I have had 5 brain and spinal cord surgeries over the past 4 years and have multiple issues with chronic pain. I've been tapering off of my meds for the past few months before I got pregnant. I'm still on some. I was shocked to get pregnant. We had been trying for a while and I was beginning to think it wasn't in the cards for me.

Sorry to ramble. But I'm scared to death about taking any medicince. I've tried to go off of everything cold turkey. I'm pretty miserable and can't sleep. I have a maternal-fetal medicine doctor. I don't see him for 2 weeks. I talked with his nurse and she told me to take as little medicine as possible. Well duh, that's what I've been doing all along. I'm not taking anything for fun! My OB had told me before that I could continue to take all of the meds that I am on during pregnancy.

I'm scared to death about all of this. I'd love to talk to you and see what pain meds you found to be the safest during pregnancy. I just need some reassurance from someone that has been there done that.

Thank you in advance!
Stacie
 
Posts: 3 | Registered: 05-15-2007Reply With QuoteReport This Post
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quote:
Originally posted by KariAlison:
Heather-

You might want to check out a website called the Teratology Society. The website is www.teratology.org.
I called this place and reviewed all my meds with them, and they gave me the straight answer on all of them. They are very well informed, and they can also speak with your doctor if you have further concerns.

I know how you feel, and I'm not even pregnant yet. I'm scared how it's going to feel to be off my meds, and then in addition to that, the pain of pregnany. But, I know you've heard it a million times, but your sacrifice will bring you the most wonderful thing in the world...a baby!

Kari


Thank You so much for this advice. I apologize for not responding sooner. I have had morning sickness on top of RSD and it HURTS.

I am going to check this site out right now, since I see my pain doctor tomorrow. My fiance is so upset that he is making me wean off my meds due to my pain. He feels that it's unsafe for me to detox and is going in with me tomorrow to speak to him. I would love to have something to bring.

Thanks so much again,
Heather
 
Posts: 6 | Registered: 05-04-2007Reply With QuoteReport This Post
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