Friday, June 01, 2012

My journey through Pregnancy ....and Chronic Pain

By Nicole Monday, April 16, 2007

 

The world is full of ignorant people. Actually, more accurately it’s full of uneducated people. I imagine patients have an excuse as to why they aren’t educated on this topic if they haven’t gone through it, but doctors? I was surprised by the lack of education in the medical community. In my search for other women in chronic pain and pregnant, I found the majority of women had doctors that wanted nothing to do with them while pregnant. They simply didn’t know how to deal with the situation, so it seemed. So these women would often be advised to stop all the medications cold turkey and suffer through the withdrawals, continuing high levels of pain each day, losing their jobs in some cases, putting a great deal of stress on the baby and themselves, going into a depression, and not to mention completely missing out on the joys of being pregnant!! There simply are not many doctors out there that are educated in chronic pain and pregnancy, and even more so there aren’t many comfortable with supervising care for a pregnant woman in pain.

 

I was very fortunate. I belong to a chronic pain program, and my doctor vowed to stick with me through the pregnancy. I had an incredible OB/GYN also, who also vowed to see me through. In addition, I met with a half dozen other doctors, all with somewhat different opinions, about the medications, the plans for delivery, etc. I wanted to stay informed, keep checking on the baby, and attempt to keep my pain managed. My doctors felt the same way. Now and then I was still confronted by people in the medical community who didn’t understand chronic pain and ultimately I had to do my best to just let it go. I knew that I was doing the very best I could for myself and my child; I was doing everything MY doctors were telling me to. For the most part, I had a great support system on that front. I also eventually found a few small groups of people online that provided me with support and helped me through the tough days. Those people really are special to me. Now we are all sharing in the joys of this new baby’s arrival, that she is perfectly healthy and happy, and that I survived being pregnant and in pain!!

 

I have to say that this feels like the biggest accomplishment yet in my life… one for which I am so proud of.  I feel like I won one for the team… that pain didn’t take this round… I am stronger than my pain! Who would have thought? I feel like a new person. I am so glad that my determination and desire for a child kept me going.  That I didn’t give up. I pushed through the pain and got past the little voices of free advice, along with help from my husband, doctors, and of course….my dear cyber friends. I listened to my heart and found strength I didn’t know I had in me. For those of you reading this who were with me on this journey, I thank you. For those who may be starting a similar path in life, I’m willing to share my story and help you through it. You can make your dreams come true with a little courage, a lot of faith and willingness to fight, and a handful of positive people cheering you on!

4/16/07 6:40pm
Hi Nicole,

Thank you so much for sharing your journey with us. It really did bring a tears to my eyes (happy tears) that you had so many wonderful people to help you through your pregnancy and ensure that you can indeed have a family even though you live with chronic pain.

I have been married for almost a year now and even though we are not ready yet to have kids, we know we want to, and I have thought from time to time how I am going to do it given my Fibromyalgia, pain meds, etc. I was talking it over with my best friend once and said to her how am I going to care for a baby when some days I can hardly care for MYSELF?

A few weekends ago my MIL said out of nowhere that she can't wait until she's a grandmother. I swear I almost peed myself. LOL. I didn't get into the conversation mainly because I'm not ready to explain to her that people in our situation just can't decide to get pregnant when they want to because our bodies function differently and we have to take medication to function etc.

Reading your story really has given me hope that I CAN do it when we're ready. It just takes more time and planning.

You are so blessed to have such an amazing team of doctors and wonderful family to help you. Your journey really is encouraging to me and hopefully others. Lucy is beautiful, your picture is just precious!

Hugs to you,

Bekah
Anonymous
Valeskasmom
1/27/10 9:15pm
Hi Bekah, You have a beautiful name by the way. I just wanted to write you and let you know one is no problem! It's really scary but you take it one day at a time. I have a four year old and I'm 16 weeks scared out of my mind about the second. With my daughter, I was able to go on bed rest so I had no worries as far as meds affecting her and when she was born we eased in to the day to day routine. I swear my baby knew that mommy was unable to stand and walk her around. She accepted me as the "rocker" and as she grew, she knew mommy had limitations and still does. There are things I can't do with her which saddens me but my husband and rest of the family fill in the gaps. I take pride in all the nurturing and love I'm able to give her. I may not be able to run around with her outside and swing her around like I see other moms do but she loves me for what I can do and we have our own special things like singing and reading and LOTS of cuddling together. The more support you have the easier it is too. Have a heart to heart with your MIL about your fears and concerns and let her and the rest of your family know when you decide to try that you will need them more than ever. I wish you all the best of luck. Once you make the leap you'll never look back. Believe me one is an easy choice, it's if you want them to have a sibling that seems to make life much harder. LOL! Don't stress, and do what's right for you and what you feel is manageable. My husband and I once considered adopting an older child but things worked out in the end. Sincerely, Jennifer
4/16/07 10:45pm
Nicole,

  CONGRATULATIONS!!!
I'm so happy for you and your story is so full of courage, hope and faith.
Thank you so much for sharing with us.

Paula
4/17/07 1:38am

Nicole,

 

Although I am not planning on getting pregnant, I did enjoy reading about your journey.  What you have shared may be very helpful to those that are hoping to one day, become parent.

 

 

4/17/07 4:06pm
Nicole,
As I read your journey through your own pregnancy, it was like I'd written it myself.  When contemplating my own future, I knew I wanted to be a mommy, but doctors had warned me against it, because I would not be able to continue the daily usage of Percocet, and how would my back handle it.  I did it anyway, back pain ran my life, and this was the unknown.  Needless to say, I had a really bad pregnancy, riddled with nausea, back pain, double hernias, leg pain, etc.  But I had a wonderful delivery for the shear fact that I would no longer be pregnant.  I have a wonderful 2-year-old, I wish I could have another, I love her so much.  And she was worth it, but I doubted my inner strength, my husband was worried about my well-being.  I was not as lucky as you to have a support group and good doctors.  What a blessing motherhood is, we are both so very lucky.  Best wishes to you and yours.  
4/24/07 2:40pm

Nicole,

 

I really enjoyed reading your story. It is very informative and inspiring!  You are a very strong woman, and very kind to share your experiences with others. I have often wondered whether I will be able to have kids or not.  Unfortunately, because of my lower body problems, I may choose not to b/c of the risk of hurting my joints more...but, nevertheless, your story still helped me a lot!!  In the event that i DO decide to go through with it, I will always think of you and the ways you got through your pregnancy. Thank you so much for this SharePost!!!:)

 

Meg

Anonymous
Audrey
9/ 3/07 12:47am

Thank you for your story. I am in chronic pain and exhausted from college and my job, filmmaking, and I want to marry and have a healthy baby very badly. I am 31, and I wondered what would you recommend for someone in my shoes? I pray, I believe, but I know it's going to be complicated. I'd love any advise. What medications can be taken? Was your pain awful? God bless you, and I see he has. God bless your child.

9/ 3/07 4:57pm

Hi Audrey,

 

I think whatever you put your mind to, you can do it. It's hard for me to give you advise of what I would do in your shoes without knowing more. Are you trying to get pg now? What meds are you on now? Things like that. If you want to talk a little and swap stories you can private message me on this site or you can email me at luv2laugh AT sbcglobal dot net. I have to spell it out or it thinks I'm spamming in these messages.  To answer a little of your questions, no my pain wasn't horrible, but I had some bad days yes. I was kept a close eye on by my doctors, worked very closely with them, and got to see the progress my baby girl was making inside me.. that kept me going.  I could feel her and knew that it wouldn't be long. I would (and plan to) do it all over again!!  I had a good support system of doctors, and a few good friends, and an incredible husband there for me. That definitely helps!  I just hope you know it can be done with the right resources and determination, in my opinion anyway. It's not easy, but hey - so many things in life aren't easy, and especially dealing with chronic pain. This is something worth fighting through though!  That smile I get every day keeps me going. She's six months old already and it's been an amazing journey! :))

 

Write me if you want to chat more.

 

All my best,

Nicole

 

 

Anonymous
Michelle
10/ 8/07 10:10am
I just found out that I am 9  weeks pregnant, and I was made to quit my pain meds cold turkey. I am going crazy with pain, I cannot function as a person, mother, student or even as a human. I cannot find a doctor who will say more than Sorry, I can't help you. I don't know what to do. I just know that I cannot live like this. I feel selfish, I want to do what is best for my baby. I have chronic unrelenting sciatic pain. I am so glad to know that there are others out there, it helps me feel less isolated. Any suggestions?
10/ 9/07 2:10pm
Whatever doctor dumped you, can he/she refer you to a pain doctor? Find a pain doctor, and keep fighting for your right to get answers. I know it's hard when you're exhausted and in pain, but there are doctors out there that will help you through this, but it took me a long time to find them. I would beg your OB/GYN to also help you find the answers you need, if she won't rx you anything for your pain. I'm so sorry you're going through this. It makes me sick how doctors just dump you like that. Emphasize that the stress of you being in pain is dangerous to your baby... and you deserve to be treated. If they don't know the answers they need to find someone who does, that's what you pay them for!!
Anonymous
Michelle
10/ 9/07 3:11pm
Nicole, Thanks so much for your reply! It makes me feel as if there is hope! I decided to just start calling around, I will find a pain management doctor. I guess I will need to be my own greatest advocate.
10/ 9/07 4:30pm
Exactly... you are the only one who can really be the advocate. If you're trying to find a pain mgmt. doc then try to get an appt. instead of explaining on the phone. Seems they scare easily... In person would be better so they can really evaluate you and listen to your needs and hopefully help you. My pain doc wasn't incredibly experienced with pregnant patients, but the things he didn't know we found answers to, and I encouraged him to be on the same page as my OB. Together they referred me to a maternal/fetal medicine specialist, who made my pain doc feel a ton better about what meds I was on. Good luck!!! I really hope you find some answers. I know it's hard...... believe me.... I know!!
Anonymous
Michelle
10/14/07 9:35am
Thanks, I did make an appointment with a pain manangement doctor, and I also found a new OB doctor. I found out that my OB doc did a drug screen on my urine, behind my back. Of course I had nothing to hide, but now I know that he doesn't believe that I have pain. He thought that I was drug seeking. I am so insulted. I am in my senoir year of nursing school, and alot of my instructors are mastered and PHD prepared nurses, they said that he was very wrong, and encouraged me to never see him again (of course I never would anyway). I have started to pull up nursing research an what can be done for pain while pregnant, and there is not much out there. I wanted to be armed with facts when I go see another doctor. I did go see a neonatologist, and he told me that I could safely have epidural steroid injections. Now I just have to wait a couple of weeks before my appointment. I have to say that this pain is seriously affecting my school work. I recieved an F, for the first time in my life, on my last exam. I was in so much pain that I could not think. I have to go talk to my instructor now, I hope that she will understand. I have to say that I am getting gun shy about telling people about my pain, alot of people shun me. I guess that I will have to be honest with my instructor, and hope that she will understand. How are you doing? How is your baby? I hope that you are taking it easy (as much as you can)! Did you take pain meds during your pregnancy? How did you cope? I'm sorry, I just have so many questions for you. You really give me hope.  Thanks so much, Michelle
10/15/07 3:09pm

Hi Michelle,

 

Good for you for making your appointments! I can't believe that doctor did that w/o your knowledge. I had to sign a consent for them to do a tox screen during pregnancy. I'm sorry that he obviously insulted you by doing so behind your back.. amazing... I am glad you have found some new doctors and really hope that they stand by you and support you to the best of their ability!

 

I understand being gun shy about talking to people about your pain situation. I didn't tell many people either, and still don't, because of the looks, the judgments, the sensitive person that I am... I already have enough stress and while I was pg had enough guilt and sadness... didn't need "toxic people" around me! Try your hardest to just rely on those closest to you that DO support you and understand. It may be a very small group... but they will get you through.

 

Why don't you email me and we can talk in more depth about all of this. I know it's very scary. My email is: Luv2Laugh AT sbcglobal DOT net. (Obviously spelled out)  Otherwise this sharepost is going to be soooo long :))  I may not get back to you right away since the little one keeps me busy...but as soon as I can, promise!

 

Talk soon!

Nicole

Anonymous
papaya
2/ 8/11 10:27pm

I wish this weren't true, but the Americans with Disabilities Act might help you with school issues.  You need to use the right language - say "I have a DISABILITY that means that I have pain that sometimes interferes with my school work. I need you to ACCOMMODATE me."  Go see the diability services people at the school.  It has been hard for me to use these words, because even though I have many, many limitations, I really try not to see myself as disabled.  What a terrible word.  I got a modified work schedule and permission to work from home sometimes from a company that doesn't allow telecommuniting in normal circumstances.  Employers and schools know what these words mean - that they have to make "reasonable accommodations" for you.  The disability services people, or the HR rep at your office knows exactly what that means and also has resources of creative ideas for accommodation.  Your teacher might help, but if not, it's not up to her anyway - the school is obligated.  Good luck, and hang in there.  I have different pain than you, but I understand how incredibly distracting it can be and how betrayed you must feel by your doctors.

Anonymous
lookingforhelp
1/ 2/08 12:28pm

N~

 

I found your logging to be very helpful. I have been going through something crazy... I started having HORRIBLE pain in my hips/legs/knees in 05. Progresivly it just got worse and still seems to be. However it disappears sometimes. ??? I asked one doc about it and he told me to stretch? I have read and researched as much as I could on my own (we didn't have insurance, just got it 12/07) and now I have written down all my symptoms and am going to the Doctor on the 3rd-Jan. I have been talking to, and experienced other people's input in good and bad ways.

1 person in particular, well 2 people, have told me they are concerned because it is all in my head!!! It has caused more pain and 'depression zones'.

I found a site about fibromyalgia and found it like a 'book of my life' type thing. I was scared and concerned and worried about how this would all take place. I have heard Doctor horror stories. Inexperienced non-compiant idiot heads who don't care, don't try, don't know. NOW, I find that I might be pregnant. (I am discussing all this with Doctor at appt.) However, I am having all this new pain with it. Bad pain. I was wondering if you knew of, or could direct me to a site that would show a books, support, anything; or something about fibro that might help me? Thanks for any help you can give. Aside from prayer and my husband, I feel so lost and scared.

 

Sincerely,

lookingforhelp

1/ 2/08 8:11pm

I don't believe pain is "all in your head".. What a joke. I do understand that though as I have heard it before too.. as have many chronic pain patients. I think there are many people on this site who suffer from Fibro, so I would search the message board. I also have found some support on PainAid.org and other websites for pain patients. I don't know much about fibro myself so I can't help you there, I'm so sorry. Just keep being persistent and someone will eventually take you seriously. It took me years to find that.. It's very difficult, I know. You aren't alone... there are so many people on this site who have been through this and/or going through it. Keep looking for resources and people to help you and direct you to the best questions to ask your doc, etc.  If you are pregnant, don't get too upset too quickly, as there are things you can do. Let me know how it goes, ok?  I wish you the best, and if anyone else reading this can help this can help with some advice on fibro, etc. please chime in!

 

~N

1/11/09 4:04pm

I'm so sorry for you. That is the toughest part not knowing what the heck is going on. I encourage you to keep pushing for answers.... if one doc says he doesn't know, ask for another, or just schedule an appt. with another... just be your own advocate and be pushy! I don't have fibro, but I know there are a lot of sites out there for people that do, just search it under google, or maybe visit www.painaid.painfoundation.org as I find that site has people with EVERY type of pain. You can read articles from doctors and also be part of a forum to talk to people with the same issues. They have have some more help to offer you as to what questions to ask your doctors. Aside from those two things I don't know what else to say... just keep being your own advocate and find out what is going on. It's not in your head... pain is a signal telling you something is wrong!  I wish you all the best... and if you are pregnant... you'll still be OK. As you can see from this forum we've done it many times - being prego and in pain!

 

ps) I have really bad sciatica in my family and it was especially bad during pregnancy. Have you ever had that kind of pain?  Just keep looking - online is a great tool - and keep asking for other opinions, x-rays, etc.. if this pain persists. You deserve to get the treatment you are paying for!! 

Anonymous
Jaclyn
3/ 6/08 9:08pm

I had a really bad car accident three years ago that left me with chronic back pain.  I had surgery that did not help.  The only way I can have some quality of life is to use pain medication.  I really want to start a family.  My doctor told me I have to get off all my meds.  It is really impossible.  I tried but then I am bed ridden and in so much pain.  I have been looking everwhere for information about taken pain med during pregnancy.  Your story really touched me and gave me some hope.  I would like to know what meds did you take and how much?  I am really scared because I don't want to harm my child because of my actions. Did your doctors tell you want possible side effects are?

 

thank you so much for sharing your story

Jaclyn

3/ 9/08 8:04pm

Hi Jaclyn -

 

Sorry that your doctors have not been supportive. That is the worst thing ever in my book...  Pregnancy and Pain together are hard enough without the hurdles of doctors that give us hoops to jump through and NO support.

 

If you'd like to talk more please email me at Luv2Laugh06 AT sbcglobal DOT net.  Lately, I don't check it as often as I'd like to b/c of my own pain and now my 1 year old keeping me so busy... but I do set aside as much time as I can to chat with women like yourself. I'm happy to do it! Let me know how I can help.

 

There is hope, I promise!

 

Nicole

Anonymous
julie bustos
7/13/08 7:30pm

jacklyn

 

my doctor told me that my son may have withdrawls when he came out but thats it

i took 10/650 oxycodone a.k.a. percocet and he is now 6 months old and i couldnt imagine him any more perfect and he has not had one crying spell or anything that would make me think my meds did something hes smart and strong and healthy

i hope this helps you

Anonymous
Anonymous
10/30/08 8:31pm

hi jacklyn,

   i also have pain every day due to degenerative disc disease and multiple spinal fusions and have to take percocet to function.  my obgyn has allowed me to take it for my entire pregnancy although, like other medical professionals, she says there are no controlled studies to know the effects on the fetus etc...   i am going to deliver a baby girl via c-section in less than three weeks, and now that the date is getting closer i am very scared and also ridden with guilt about having had to take meds while pregnant.  i have stopped working recently in order to wean slowly down on my dosage as instructed by my ob so that there is less chance of the baby being born addicted to narcotics, and it has been extremely difficult.  i'm wondering how much oxycodone/day you took and whether or not your baby has had any problems as a result.  it is so hard to live with pain every day as it is, without having to feel guilty and scared at the same time.  any advice would be appreciated.  thanks.

janet

Anonymous
Stephanie
4/13/08 11:56pm

I wanted to post, even though this entry is sort of old.  I am 36 years old, and pregnant with my second child, 7 months along.  i am also a chronic pain sufferer, and going through some tough times.  I had no idea that this was going to be something so hard on me, and my baby.  I did not plan this pregnancy, but of course, I don't have any regrets, just wish I had known more about what was ahead of me.....

I have suffered with chronic pain for over 10 years.....daily which after so many attempts at helping the pain, I have relied on medicine now for the last 5 years to get me through the day.....and even that isn't enough sometimes, but it is better then nothing.....I also run a home daycare and now that I am getting bigger and farther along, the extra weight has been causing some extreme pain now, which is awful...

My OB is a regular one, not a high risk OB or anything....he was made aware of my condition from day 1, for as soon as I found out I was pregnant, I informed him of all meds, and was told what I could still take and what I could not...I continued the ones I could, under his care, for he was prescribing them.....

Now that I am where I am, he is now freaked out and does not want me on the meds.  He is wanting me off them, and that is something I am so afraid of, and the thought of suffering the next 2 months is not a happy thought.....he sent me to a spine specialist (not sure why) to see what his opinion was, and this dr. gave me the "no more meds" speach, and wants me also off them right away and told me I would just have to "get by" and deal with the pain.....

If that was as easy as that, I would have from day 1....does anyone think it is easy to take meds while you are pregnant??  I was in tears and so scared of what they are thinking of putting me through.....they have no idea that this is Chronic, not a back ache, and something that has to be treated, otherwise, I am not going to be able to function.....

So, on the phone I go, hours and hours, and find a pain management clinic that I am working on getting into....my OB is sending my records, along with my PCP....they deal with pregnancy and pain and I feel they know what to do for me, and can get my through this safely and comfortabley....

I also tried so hard to find others out there that have suffered with pain while pregnant....not alot of people out that, at least not posting on websites.....and what I have read, women are just floored at the thought of a women taking meds while pregnant....it is like how could you do that??  what about the baby???  it is so hard and you are judged all the time....

This journey has been hard, and I am fighting like crazy to get the help I need.....I refuse to be left untreated or let these jerk Dr.'s treat me like a bad person......I have a chronic condition, and it cannot be ignored just because I am pregnant....I am so scared sometimes, and feel alone...

but, I have also found a Chronic pain group online that has supported me through this and gave me so many suggestions.....I am just amazed at how many dr.'s don't want to deal or touch a person in my condition that is pregnant.....but so far, after ultrasounds and tests, my baby boy is doing fine, and as a mom, I am doing all I can to help myself and keep him safe......

I guess I feel by maybe sharing my story, I can help someone out there that is going through this, or is thinking of getting pregnant that suffers with Chronic pain....IT CAN BE DONE, you just have to get there.......I know I can get through this...and I am so greatful for people like you who shared her story......it means alot and it does help......so to the women thinking or going through being pregnant with chronic pain, you can have a healthy baby, just find the right Dr., and don't let the judging Dr.'s get you down....you can be treated while pregnant...help is out there, you just have to find it.....

Good luck and I wish the best for all who are out there suffering....God bless

Anonymous
Anonymous
10/30/08 8:42pm

i am wondering if you decided to continue meds until delivery or were able to discontinue them.  i also live with chronic pain from multiple spinal fusions and have been on narcotics for years.  i am to deliver a baby girl via c section in less than three weeks and have been trying to wean completely off my meds which is next to impossible if i am to be at all functional.  i am so scared and guilt ridden as my due date approaches;   any advice or encouragement would be appreciated.  thanks.

janet

1/ 9/09 8:27pm

Good for you! I am so sorry I haven't checked this site in a very long time. I'm in a huge transition period in my life, and now my 'baby' is nearly 2... so I'm chasing her around...and yes, still in pain. I just hope that we can all help each other out. A doctor told me that "nobody should EVER ask you to be in pain"... and I had to keep repeating that to myself...and it's their job to help you! Good for you for being your own advocate! That's what you have to do. I could not have done this without the doctors I had...and it took me years to find them and then I planned with them my pregnancy. I was fortunate that what they didn't know, they helped me find people that did know. I wish the same for you...and by now you probably have had your baby... so please send us an update! It isn't easy... and people think just because you're pregnant then "poof" your pain must be gone right? wrong!!

Anyway - give yourself a pat on the back!!!

Best,

Nicole

1/10/09 11:57pm

I am so honored that you read my story and commented on it! thank you....it is so nice that my journey has helped some people.......

Well, my son is now  months!! and he is fine.....my pain is alot worse now since I have to lift and carry him around, but it is all worth it.......it is such a struggle having chronic pain......everyday I deal with it....I also run a home daycare and that is alot of work itself......

What kind of Dr. do you see for your pain?  I see my PCP who has been treating me for alongtime......it is so tough keeping up with a child when you are in pain and mine is still young yet!!

you can email me anytime.....I am wishing you less pain and I appreciate you writting me!

thank you

stephanie

1/11/09 3:57pm

Yes I can relate... I don't like to say that to moms who are pg, but the pain does get worse (for most it seems) after the baby is born... all that lifting and carrying and no sleep!  I will say that mine is almost 2 and now that she can put herself to bed without being walked, and doesn't ALWAYS have to be carried, it has helped a lot! You'll go through ups and downs with different types of pain during each stage of them growing. But what a blessing eh?!! :)) Congratulations to you!! Remember to try to take some time out of the day forf you - even 10 minutes to just lie down or take a bath or whatever... you need it and deserve it!!

Anonymous
nurseburnstick
6/26/08 6:34am

I was very encouraged to hear your story but how did you do it? I also suffer with chronic pain and would love to have another child but don't think i could manage without painkillers at least to sleep at night else I just would be in agony and couldn't sleep or function. I know you can't give advice but are you saying that you continued on pain relief?

1/ 9/09 8:30pm

I did continue to take some pain meds. I just don't include all of that in my posts. I had to discontinue a lot of the meds I was on, and remain on short acting ones, and tried to take the minimum that I could to tolerate the pain...but yes, I did have to take the medication. Hope that answers your question! :)  Nicole

Anonymous
julie bustos
7/13/08 7:26pm

nicole

 

hi! i wanted to write because im in the same boat i just had my son hes six months

and healthy he never had withdrawls or any sign that i took percocet my entire pregnancy and im so glad you posted this b/c when i was pregnant with him i didnt tell anyone i didnt have to i was on meds b/c of the judgement and the guilt that i may be harming my child im so relieved im not alone and i hope other moms to be with chronic issues find it a little comforting to know their not the only ones and that their babies will be beautiful and healthy just like ours

 

god bless your baby girl ,the ones on the way and my little man too

1/ 9/09 8:34pm

congratulations!!! :))  yes, it CAN be done!!

 

all my best,

Nicole

 

ps) I don't check this site often these days with a toddler, so for those of you trying to reach me either send me a private message through this site or email me at Luv2Laugh06 AT sbcglobal DOT net (need to spell it out or the post kicks it back). I'm happy to talk with anyone that is in the same boat...!

Anonymous
Anonymous
6/30/09 6:49am

I am in a similar situation. I suffer with chronic pain and have found myself 6 weeks pregnant. Unfortunately I have NO support from my husband in this regard as he has heard the opinions of the doctors who advised to quit cold turkey and fight the pain. I am desperate to just get advise as to what medication is acceptable to take. I am more than willing to try anything that works for the pain but I simply cannot be on no form of pain meds as I am terrified as to what the stress will do to my unborn child. Please if there is anything you can do to assist I will be eternally grateful.

 

6/30/09 1:31pm

I'm so sorry.. What meds are you taking now? Cold turkey is NOT good for the baby... if you are going off your meds you need to wean carefully and slowly... and talk to your doctor about getting a referall to see a doctor who works with high risk pregnancies and has education about people who take medicine during pregnancy. Often times it's just a case of an uneducated OB and once they learn how to approach this with some pain management for the sake of the unborn child, they change their tune and are able to support you. Often it seems to be just a knee jerk reaction to say go off your meds when they don't fully understand all the options. Do you have any supportive doctors you can appeal to for further guidance in finding you options to be on minimal  medicine but still gain some pain control so you don't stress out the baby and put it at risk??

 

If you want to talk send me an email please.. Luv2laugh AT sbcglobal DOT net. I'd be happy to share more of my experiences with you.

 

Hang in there.. Nicole

Anonymous
Anonymous
7/ 1/09 3:04am

Hey there...

 

Thanx so much for replying so quickly..I saw a new OB yesterday and advised that I had done some research and found a site where there are so many of us in the same boat. She is wonderful about it all has now put me on a dose to wean carefully over the next few weeks and I only have 6 weeks to go...Once I have reached my 3 month goal I can go back onto the exact dose I was on with no ill effects to my little one. Thanks so much for this site it really gave me the strength to fight back when I was first told to simply quit, the only thing I did quit was the doctor...I have found a great support in my new OB and since she is so accomodating my hubby is also MUCH more supportive.

You have been such a breath of fresh air to me and I thank you from the bottom of my heart.

Maryna

 

Anonymous
PJ
7/ 6/09 4:04pm

Wow, I am both surprised and not surprised at how many docs have told us to just "quit" cold turkey our pain meds... 

 

I have been suffering from moderately severe spinal stenosis with spurring and spinal narrowing, as well as reversal of the cervical spine for many years..  I didn't seek treatment until about 5 years ago after my second son was born and the pain was unbearable.  Turns out my condition is congenital, meaning I was born with it.  I had to see three different docs to get any kind of pain relief even before I was pregnant.. I was finally given Vicodin three times a day and referred for ESI's..  (epidural steroid injections).  However, when I moved, my current PCP refused to increase my pain meds, even though there is not a neurologist down here to give me injections.

 

And now that I am pregnant with our third (unexpectedly), I am having trouble again getting a doctor to help me.  My PCP cut my Vicodin three times a day cold turkey once I told him I was pregnant, My OB was okay with me taking it as long as my PCP prescribed it for me.  So now I have been weaned completely off until I can see a perinatologist (a high-risk pregnancy specialist/internal medicine specialist for prenatal care).  I've been without pain medication other than Tylenol ES for a week, and have two more weeks to go. 

 

I am so fed up with docs and the lack of concern.  However, it is not entirely their fault.  You can blame the DEA for most of it. 

 

At any rate, I am just hoping that the perinatologist will be willing to work with me, and understand that this is a chronic worsening condition that is only getting worse, with age, and with growing pregnancy..  I now also have lower back pain and am the only employed person in the family, due to layoffs and the economy.  I work from home at my computer all day, (I have 8 years in the medical field as a medical assistant and phlebotomist, as well as some pharmacy, but went to medical transcription to be home with my second born - we decided as soon as he was in Kindergarten I could return to work full time, but now I am pregnant again so I am stuck at home all day, ugh)  but this job has worsened my pain, and exacerbated my condition to the point that I can sit at the computer for only 15 minutes at a time, and my work and income are suffering greatly for it.  Now that I have NO pain control at all, I can barely stand to sit still at all..  lying down hurts, sitting upright hurts, walking hurts..  its called CHRONIC pain. 

 

But reading these stories have helped me to wnat to continue fighting for my right to be comfortable at the very least during this pregnancy, and not accept being told I have to suffer the pain.  Being in pain is just as bad for the baby, if not worse, than being on Vicodin alone.  I can tolerate being on just vicodin, is that too much to ask? 

 

Thanks for reading and listening and I hope that many of you who have had troubles with your doctors, find the deserved relief you need. 

 

I too am tired of being made out to be a bad person just because I need some relief during pregnancy, by doctors, uneducated medical assistants, uneducated medical receptionists, and ignorant moms who have perfect lives. 

 

God Bless all of you and your beautiful healthy babies!  :)

 

PJ

Anonymous
April
7/29/09 7:02am

I am currently in a position where I'm on my feet 9 hours a day and also have chronic pain.  I just found out I am pregnant about 6 hours ago, lol... and already freakin out about everything.  One thing I am trying to find out is any opportunity to work from home with only a highschool diploma but 7 yrs of administrative and property management experience.  Do you know of anything I could do from home on the computer without having to have any type of schooling? Any information would be greatly appreciated. 

 

Thank you.

April

Anonymous
PJ
7/29/09 1:31pm

Hi April,

 

Congratulations on your pregnancy!!!  I hope that all works out for you with your conditions, and pain control.  I will answer this in two parts, as I wanted to also tell you that I finally did see my perinatologist, who told me that the dose of Vicodin I take daily will have no affect on the baby, and that with Vicodin, their biggest concerns are withdraws for the baby, and their license liability.  However, I only take it three times daily right now, and the perinatologist said that there is minimal chance of the baby even having withdraws with the low doses I take.  So hopefully that will ease your mind a bit with some of your pain medications, although I am not sure what you are currently taking.  Also, definitely talk to your doctor about it because if there are any other complications in consideration, they may not agree with what my doctors told me.  Just know that some pain medications are perfectly safe during pregnancy. 

 

Now to answer your question about working at home.  I am a Medical Transcriptionist.  You can google it to find schooling for it..  I didn't go to school or specific training for transcription because I had already completed schooling for medical Assisting, and had several years experience in the field already, so it was more of a transition for me...  However, unfortunately, without medical terminology knowledge and some form of medical education, it will be difficult not only to find a job as a transcriptionist, but it will also be very difficult to make a decent income with it.  I had several years experience in the medical field before I started transcribing, and while typing doctors dictations for internal medicine and primary care were somewhat easy, aside from getting used to the coordination of typing what you are hearing, and the quirks each doctor has with his dictation, if you pick up a specialty, such as dermaology, urology, or anything of the sort as I did at first, you will spend a lot of time researching terms, and listening to the dictation over and over. In my first few months, I literally spent 12 hours a day (sometimes including weekends) trying to type an hour long file, just because I was researching, listening, re-listening, caring for my newborn at the time and my 5 year old, as well as trying to keep up all the regular duties of the household.  It wasn't the easiest and I had many days where I just sat down and cried..

 

I would love to be able to tell you it is an easy job, as it sounds like an easy job, but unfortunately, most people don't realize just how difficult it can be.  In fact, they have started calling us Medical Language Specialists, instead of transcriptionists, because without the knowledge of the medical language, it is next to impossible.

 

I would suggest looking for a training course (if you are interested in transcribing), most of which you can do from home on your own time, at your own pace.  That will give you the basis of medical terminology that you need, as well as the training you would need to get a job as a medical transcriptionist.  There are hundreds of companies online that hire you right from your home, some of which will even send you the computer and equipment you need to get started.  I can't say the pay is the greatest when you are first starting out, in fact I was making 10 cents per line with one company in my local area, and after 5 years of experience, I took on a second job with an online company, and they would only pay me 6.5 cents per line, which averages out to about $6.00 an hour, if you can type 65 wpm. 

 

If it is something you are interested in, it can definitely be done, and if you type pretty fast, it will be easier.  But in all honesty, I wouldn't expect it to be able to replace your current income fully, for at least a year, maybe more. 

 

If I can be of any more assistance or you have other questions, feel free to ask.. 

 

Best of luck to you and your growing baby!!!

Anonymous
2nd_on_the_way
1/21/10 8:20am

I hope you have found some answers by the time I'm posting this. It's extremely dangerous to make a pregnant women go cold turkey. Even actual drug addicts that use herion off the street are usually given methadone while they taper off. I don't understand why they'd treat chronic pain patients like criminals, while not even giving them the courtesy of not sending them into withdrawls.

Anonymous
April
7/29/09 4:30am

Hello Nicole, congratulations and thank you for your story.  I was, however, hoping for a few more details in your story to help me out but hopefully you will get this and be able to respond to me.  I have suffered with chronic pain for almost ten years now.  I am 27 years old and have stainless steel metal rods in my back and I'm constantly in pain.  I have a job which requires me to be on my feet for 9 hours a day and it is very difficult and impossible without pain medication.  I knew I would have difficulties with pregnancy but I also knew that I definitely wanted a child of my own.  We found out tonight that we are pregnant, but was quite expecting it so soon.  Unfortunately I do not have the opportunity to just quit work and quit taking pain meds but I definitely do not want to do anything to harm my child.  I have been trying to research all possibilities but not having much luck.  Can you please tell me what you found to help with the chronic pain that also did not pose a threat to your baby?  I'd greatly appreciate it.  At the moment I am prescribed pretty heavy duty meds that barely take much of my pain away so I'm very scared of how I'm going to get through it all.  Thank you.

7/29/09 5:00pm

congrats on your pregnancy. I will try to get back to you soon... I am not quite sure what more info you want but assume it's about medication. If you want to email me at my home email it's Luv2Laugh AT sbcglobal DOT net and we can chat. Or give me your email.

 

I will say to everyone that right now I'm going through a very difficult time. So I apologize if I haven't been getting back to some of you right away. I will do my best but please be patient with me.

 

thanks,

Nicole

Anonymous
2nd_on_the_way
1/21/10 8:16am

Hi Nicole. I'm currently pregnant with my 2nd child. And this is my 1st pregnancy since I developed chronic pain. I can totally relate to your story. I'm sorry you have had so many issues, and I'm also glad you found good doctors who knew what was best for you.

 

I also have had to deal with the rampant ignorance and just meanness and intolerance. People think I'm either being selfish and stupid by even thinking of getting pregnant. Or that I must be lying about how sick I really am. Or that my doctors are quacks that will tell their patients whatever they want to hear.

 

Funny they can't seem to comprehend that there actually are some doctors out there that have experience with this. There are women who have had successful pregnancies, and that have the support to be able to raise the child once they're here. I've had people suggest I should abort or give the child up because I don't understand what I'm getting myself into. THEY are the ones that don't understand!!

 

Take care, and thank you for writing this. I'm thinking about starting a blog myself about chronic pain & pregnancy. My only fear is it will be found by people who only want to hurt me and spread more ignorance instead of learn from it. The last thing I need is to pour my heart out helping others and get basshed for it. I'm sure you understand!

1/22/10 3:49pm

Great post, and yes... I do understand. People can be very ignorant and judgmental. I was very very selective in who I told I was in need of medicine while pregnant. A very small handful knew. It wasn't until after my pregnancy that I opened up about it more. I would suggest you just be careful who you share what with... because pregnancy is such a delicate time to begin with, and you don't need anyone taking away from that experience. We struggle enough with doctors that write us off (and you aren't the first person I've heard from where the doc suggested waiting or aborting b/c of pain - which is outrageous).

 

I have often thought of doing a blog too, but it's so deeply personal I am not sure I could do it either to that extent. Websites like this seem like a safer forum to share experiences with and therefore I tend to "blog" on sites where I may be helping those that are in my position, rather than strangers that don't get it - if that makes sense.  It is helpful to write down your thoughts and all as well though, through shareposts here or other such sites, or a journal, etc.. Even if you don't share your thoughts with anyone, just to write things out.

 

I wish you lots of luck and keep us posted please!!

 

:) Nicole

Anonymous
valeskasmom
1/27/10 9:04pm
Thank you so much for sharing your stories. I'm 16 weeks pregnant and am terrified of harming my child with my pain medication. I've come off Tizanidine and Clonazepam but I must stay on the Duragesic as I have a four year old and still need to function in some capacity. My doctors have been wonderful but a little closed mouthed on the medication topic. I've only been told I have the choice to wean off or continue through and let the baby go through withdrawal with the hospitals neurology dept. I'm scared to death! I have to function for just general chores and to take care of my four year old but I don't want to harm my baby in the process. I could really use the support of those going through or have gone through this very ordeal and there's a general lack of understanding or groups like this that can help me out. I've never used a forum before so I don't really know how to go about this. I just hope there's some really nice women out there who can help me get through this by email or maybe I can learn how the forums/threads work.
1/30/10 11:59am

Hi! I know it's realllllly scary!! I have a little info you may find helpful if you want to email me? It's Luv2Laugh06 AT sbcglobal DOT net. 

 

In the meantime, I think you will find most doctors who aren't specialists in high risk OB, tend to be a little closed mouth. When I was pregnant with my daughter I didn't have any forums like this, and oh how I wish I did! There are so many women going through the same torment you are, and need to function yet obviously want to go about it safely. I know people who don't understand chronic pain can be very judgmental as well and that only compounds the stress.

 

If you want to talk, email me.. I'd be happy to share with you what I've learned.

 

All my best,

Nicole

Anonymous
J. P
3/ 4/10 4:16pm

I read the story from I think it was nicole and was very encouraged that I can do this.  All I have ever wanted was a baby, but a car accident left me with a back that has numerous problems and surgeries.  They say I will always be disabled and at 34 would never work again.  I am coming off some meds now but I am really trying to get info to take to my doctor so it isn't just him telling me what he thinks.  I hope that it will happen for me, I am a fighter but hearing stories of success I feel even for confident.

Thank you

Anonymous
Nicole
3/ 5/10 11:06am

Hi,

So happy to hear that you are going to try. It will be hard, no doubt, but you can do it. Do you have a good support system? What meds are you taking? I prepared with my doctor for our first child and so if you'd like to know more about what I did with him we can chat if you want. I have an email I use here, it's Luv2Laugh06 AT sbcglobal DOT net.

 

I am happy the stories shared here have helped you. There are so many women who are going through this, or just have. I talk to them so often and learn a lot from them too. Mostly, it just shows that we are all stronger than we realize when we want something bad enough!

 

Best of luck, and email me if you'd like.

 

Nicole

8/23/10 12:07pm

Isn't it amazing, this world wide web?!?  I've been putting off Baby #2 for 4 years due to chronic pain and just this week-end decided that I might be crazy enough to do it anyway.  Your story is inspiring and incredibly helpful for a person jyust starting to allow herself a glimmer of hope.

 

Thanks for sharing.

8/23/10 1:48pm

I'm happy that hearing my story (and the many others since this original post) are inspiring and helpful to you.  It's not easy to be in chronic pain, then add pregnancy on top of it. I had close to zero support outside of my immediate family and 2 doctors during my pregnancy. So it does my heart good to know that at least after the fact, telling my story, has helped others.

 

It's stories like yours that help me. That you've put off trying for another baby b/c of your pain and now you will try. I've been trying again for a very long time and am beyond discouraged, so when I hear others are pushing through it and trying despite their pain then it gives me a little nudge to keep going. So thank YOU as well. :)

 

Best of luck with everything!!

n.

8/23/10 7:02pm

Nicole,

I am very sorry to hear you are struggling TTC, I'll think of you and hope for better luck very soon.

 

I've booked a couple or Dr appointments to day and am feeling positive about the potential.

 

Cheers,

Malia

Anonymous
Dr.Gokul
9/21/10 1:49pm

Hello,

 

Congrats!!!!

 

I was reading about your journey and I really feel your are completely right. It was a comendable job from ur side.

 

Congrats again!!!!

10/27/10 4:30pm

I can't seem to stop crying reading through this forum.  It is just terrible how people, especially docs, can dismiss what you are feeling so cavalierly.

 

I feel reading through this that I am simply lucky not to have the chronic problems others have, but I am, and have gone through pain for so long, that I just need to get it out... It seems like the right area.

 

I have had intermittent pain since I was 12.  I had endometriosis right from the start, and all the docs told my parents I was faking to get out of school.  Nevermind that every month like clockwork (weekends and summers), I had terrible pain, sometimes so bad I would collapse in the hallways, unable to make it to the nurse.  I was 19 before a doctor even considered something may be wrong.  By this time, I was taking so much OTC meds just to get by, and even the prescriptions I sometimes got never touched the pain in any way.  Finally, I was told that I NEEDED a laparoscopy to diagnose endometriosis before they would even think of treating me.  Little did I know this would make everything so much worse...

 

The doctor ended up putting a hole in my intestine, and it took 2 days to figure out.  By then, I was in severe pain, and only have vague memories of being wheeled into an operating room on Sat. at midnight.  They gave a bowel resection, and it took weeks in the hospital, and months of recovery to start moving around normally.  I also quickly found out that the endometriosis was as bad as ever.  About 6 months later, I started having to get admitted to the hospital for pain.  I would stay there anywhere from 2-4 days for what they believe may be intermittent bowel obstructions (or irritable bowel syndrome, they never actually give a definitive statement, they never do).  The X-rays indicated there may have been obstruction... but all they see is pent up gas.  I was referred to many doctors, and will always remember the GI who prescribed me anti depressants, and called my PCP telling her that was all I needed.  All my doctors said was that I couldn't get any real medicine, because one day I might get a full obstruction and need emergency surgery, and if I fell asleep on good meds I could die... so the hospitalizations continued.  I finally got a pain management appt and remember bursting into tears when the docotr told me he believed my pain was real, and he would give me meds to control it (fentanyl lollipops, if you don't know, they are lollipops so you can suck on them little by little and control your own dosage, so you do not have too little or too much of it)  It finally started to get better. 

 

With my lollipops, I was able to relax more, knowing if it hurt I would not spend hours on an ER waiting room floor waiting for a doc to see me and give me something.  I actually had fewer pain episodes, and when it did flare up, the meds allowed me to treat sooner therefore recovering faster (due to less trauma).  As per my docs instructions, when the pain was worse, or if I threw up or felt weird in any way, I would still go to the hospital to make sure it wasn't serious... after all I DON'T want to die if there is something. 

 

For years it got better and better.  I felt almost normal, but in Feb of this year, I had my worst episode yet.  Seven days in hospital with me begging to get an NG tube so the pain (which wasn't controlled by the hospital drugs) might subside a little.  Ever since, I have had pain in my stomach all the time.  It gets a little better for a day or 2, but then I relapse.  I even lost my job (of just sitting there, receptionist) because of it.  It hurt all the time, especially when I eat, and when I see a GI specialist, he still tells me the tests are inconclusive, and it could be endometriosis, like I can't tell the stark difference between the 2 pains, or it's simply "in my head". 

 

I've spoken with many specialists, although they cannot confirm anything they believe I have adhesions from the surgery gone bad.  There is nothing to do about it.  They can surgically remove the scar tissue, but most likely those would grow back, and new ones would form from surgery.  Other than that, it is simply pain management.

 

I have gone back to pain management, but the meds are only treating the immediate pain, not helping it go away.  I had been trying to get pregnant before the incident, and spoke with all my docs about my fears and problems.  They said they could manage it. 

 

I am now 6 weeks pregnant and in pain.  When I called to confirm (again) that the meds were OK, all of a sudden, OB told me to check with pain management about the viability of my meds during pregnancy (they have little experience, they said)  Pain management has said they do not like treating pregnant women with meds (news to me, since I was upfront about everything) and they usually defer to OBs.  They have recommended me not to take my meds, and I don't know what to do.

 

I can't sit upright, haven't for a while, without pain coming up.  My back is killing me because I can't sit right, and am almost constantly lying down.  I can't sleep for very long at a time because my body is in pain all the time, and I am so tired.  I have made appt's do discuss things further with my OB, and I am starting to see a pain psychologist who may be able to teach me techniques to manage things.  I feel lucky to have been fired, because I can't imagine having to go to work right now, and we have some money set aside, so we don't have to worry about the loss of income right now.

 

I feel lucky because, I hope, they will find something at some point to calm it down again, maybe for years, but I am still scared and frustrated.  I can't find any literature about my particular problem, I can't find people in the same boat to relate to.  Most people are better off, of course, but the pain websites and such are worse ("real" chronic problems), not intermittent like mine.  I CAN go without meds, but it just sucks!

 

I'm sorry to go into so much detail, but I guess I needed to let it out.  I don't know about the rest of you out there, but I can't really do that with my spouse and family.  They would worry so much, and I would end up having to take care of them while they drive me nuts trying to take care of me.  There is absolutley nothing they can do.  My husband is great and has taken up the slack around the house.  He's cooking (a rare event indeed) and cleaning, but if I even give him an inkling of how I feel, he would obsess about it, feel bad for me, and I would end up having to reassure him that everything will be alright.  Same with my family, who live overseas.  I'm tired of getting their advice because they met someone who got pregnant with endometriosis and it turned out all right (NOT THE SAME PROBLEMS!!!!)  And being foreigners (my family is French, my husband and his family are Indian), they are VERY judgemental about medicine of any kind, always have been, let alone now that I am pregnant.

 

Once again, sorry for the rant, but it felt good to get it out, and it felt good to read about people who made it through.  I know my current hormone levels are aggravating my frustration, but I thank you for listening (er... reading)  I know there is nothing specific anyone out there can do... but it feels good sharing and knowing others are out there.  Good luck to everyone out there!!!

12/23/10 4:34pm

Bobbishel -

 

I'm so sorry I just saw this... not sure why it didn't send me a notification!  Can you post an update on how you're doing now? Are you in any better shape with the pain management? Feel free to send me a private message if you want to chat. I am sorry you have been struggling so... I know that my pain mgmt doctor wasn't experienced with pregnant women either, but he worked WITH my OBGYN and together, along with a perintologist, got my pain meds to a level we were all comfortable with. My pain was still very high during pregnancy, but not too high to the point that it stressed the baby too much. That is the goal.. if you are too stressed from the pain it really can make the baby stressed and force you into early labor - which you don't want obviously...

 

Anyway, before I go on and on... update us if you want to or send me a message. I hope you are feeling better and that baby is OK. You can do this! I know family and friends are judgmental as they don't understand at all. I stopped trying to explain it and when I was pregnant with my daughter my husband and best of friends were the only ones who knew how much I still suffered and that I still needed some meds. They thought b/c I was pregnant my chronic pain magically disappeared I guess...

 

Hope to hear from you soon. Hang in there.. you are all SO blessed to have a baby on the way, and you do have support here.. so let us help you. How can we help you? :))

 

Best,

Nicole

Anonymous
momtobe
12/22/10 2:11am

I have had chronic pain for more than a decade. I am 31 years old. I was on elavil, effexor, valium, and percocet when I found out through an MRI that I was 5 months+ pregnant! I was horrified. We decided against kids because of the disability (I too was on all these meds just to work 20 hours and try to care for myself). My husband had a vasectomy that reversed itself. I was petrified what my meds did to my baby. My pain specialists would not continue meds (to titrate down) without the okay of an OBGYN, but all I had was a gyno at that point. I went to planned parenthood to get an idea of how far along I was (all we were told was pregnant at that point) and get a note giving the okay until I could get in to see an OBGYN (not one would "squeeze me in"). I was crying nonstop worried I had hurt this innocent baby. I went there, they refused to do an ultrasound and told me it was better not to because I had to abort the baby! The meds I was on MUST have caused severe deformities in "the fetus". I left hysterical. They told me I was irresponsible if I tried to have this baby out of guilt, it was unfair to her. They also implied (we had not done the testing yet) that I must have had an affair since my husband had a vasectomy.

  I was a mess. I went to the ER out of sheer exhaustion, confusion and desperation. I had three male doctors and never felt more nurtured! They did an ultrasound, said I was more than 5 months! I had no signs of pregnancy except the start of weight gain (but I was used to bloating with the IBS, so I thought thats what it was). They held my hand and told me they would start the tests to see if any damage was done, to HER. I spent the whole night and following day there seeing every type of specialist and they did dozens of tests - she is fine! I stopped everything except the percocet. Every doctor, including those I followed up with - more than 20! all said my pain level had to be kept managed. Anytime it got too high, her heart went nuts, mine did (I started passing out and they found two holes in my heart) and I had contractions. I have been on bedrest due to the passing out and pain for 3 months now. Because of my back (which has gotten SO much worse through this), we are doing a c-section. The ER sent me to their team of OBGYNs and perinatologists who worked with my pain specialist. The pain has not been good, but I have made it through! She is healthy, 10 fingers, 10 toes, hair!, perfect kidneys, brain, stomach, etc. All tests came back great. She is 20 inches at this point and 8 lbs. It can be done. I wouldn't do it like I did. We did not do a tubal because of my condition, but I will have one done now when they deliver her. If you decide not to have kids, a vasectomy is NOT enough - be careful on top of it!  You cannot unring this bell and the risk to the baby is very real if not done as Nicole did it. I will feel better once she is delivered and I can touch her and KNOW she is perfect. Pictures and test results are not enough! If you want kids and you have chronic pain, you do have the strength to do this. I did it with just the day-to-day support (cleaning, shopping, etc) of my husband. Just find a group of doctors willing to support you and help you. You should be considered high risk because of the chronic pain and be seeing a perinatologist. What medicines to be on - that is a case-by-case basis and no one should be telling you but the docs you decide on! Nicole is right - people love to give advice, criticism, or even unsolicited support that is uncomfortable at times! Just know, it can be done, but it is a lot of work, a lot of pain, a lot of wondering if you can make it the next hour let alone month, and a lot of stress from the uneducated comments, etc. You can make it that next hour, that next day, that next week, month and soon, you are a week away from your delivery date!!!  Do not let anyone tell you which decision is right. I still stand by our decision not to have kids! I dont know how I am going to do this alone when she is born - I do not have a strong support system. God had other plans and I love her and feel blessed, but I would not do it if given the choice. The great thing is, neither decision is wrong! Whichever you decide - you are right and do not be made to feel guilty! Not every doctor will take you off of your pain meds. Once an OBGYN signed off, my pain specialist has kept me on. I voluntarily have been tapering as we get closer to due date.

12/23/10 4:25pm

Wow... that is one of THE most incredible stories I have EVER heard! You are amazing! Congratulations on a little girl first off, they are just wonderful in my opinion!  Second, what strength you had/have! I think the meds you were on are not "automatic birth defect" meds to the point you'd need to abort the baby - at five months on top of it... SO glad you didn't do that and that you got more opinions! Perintologists are the best for us in chronic pain, and I am so glad you are able to stay on the percocet a little to help. I've known many women on that medicine while pregnant and did just fine! I know it's not the same seeing the ultrasound and tests in that fashion versus holding her and seeing her and knowing she's ok. You won't truly feel that relief until she's in your arms and screaming like she's supposed to right! It is by far the BEST sound in the entire world!! I had a c-section too due to my pain and injuries. You will have that little girl in your arms soon!! wow.. I'm still in shock over what an ordeal you've been through. I guess you were meant to be a mother! :)  It IS hard as you said, and you will need some support, even if just through writing other women that are going through it... but you will do it and I bet you will surprise yourself. Everyone asks me how I do it, but really it's just one foot in front of the other. As a mother, you don't have a choice... you just DO it. It is one of THE hardest things I've ever done, having a child while in chronic pain, but by far the most rewarding experience, and I wouldn't trade it for the world!

 

let us know when baby girl arrives, and thank you thank you thank you for sharing your story! You do have a lot of support here if you want/need it. I haven't been on here in a while as I'm going through a lot on my end, but I do read the updates and just wanted to say how very proud I am of you! Good for you for reaching out to doctors, for being as strong as you can be, and you are simply amazing!

 

All my best & happy holidays!

Nicole

2/15/11 10:55am

I can't believe I haven't found this discusion before now! 

 

I have suffered from chronic pain for almost 4 years now, only controlled by nartcotics. We were trying to get pregnant when I got hurt, and it was about a year-and-a-half before I began to get my life back together. Part of that was finding out that I COULD get pregnant and carry a baby while on them. 

 

It took us a LONG time to get here, because of other underlying issues discovered around the same time... but now I am 5-and-a-half months pregnant. 

 

I am an educated person, and well-versed in human anatomy in fact, and still had no idea that narcotics have been used for a very long time iin pregnancy and have no effects on the baby development. 

 

I know this post is very old, but I wanted to post a link to an organization that helped me to gather information to take to my OB and my Pain management doc. 

 

Interestingly, both the OB and the Pain management doc gave their blessing without any convincing on my part.  I cried in both offices in fact... because I was so worried they would not support me. My GP however, despite the specialists opinion and the research does not. (jerk)

 

anyway... for someone looking to get started:

 

http://www.otispregnancy.org/

 

is an organization that helps with maternal exposure. In fact, I am now trying to determine if breastfeeding is an option using them as a guide! 

 

So, if your doctors are trying to make you go through withdrawl (VERY bad for baby) or you need help, start here to get the information you need, and work to find a pain management and high-risk-OB to help you. Be your own advocate, they are out there!

2/15/11 12:13pm

So glad you have found support and that you are on your way to a healthy baby!

I just wanted to add that I don't know what meds you are taking, but I stayed on my medicine, even went back to the "normal" dose I was on before I lowered it for pg, while breastfeeding. I only breastfed for about six months, but that wasn't really due to my meds, it just sort of happened like that.  Anyway I saw no issues with my daughter and as you may know breastfeeding is so good for them even if you can only do it a few weeks - they benefit greatly. It also is a little bit of a natural weaning process re: the meds depending on which meds you are on. Some meds don't pass through breastmilk, some pass through a lot, and in between.   Good luck to you and thanks for the info on the other link. I will have to look that up.

 

best to you and baby!

nicole

Anonymous
Michelle
5/30/11 10:12pm
It is amazing for all of you to share your stories. I have had chronic back pain for 8 years now. I am only 22 and have been on pain meds for the last two years. I was terrified of the thought of never being able to start a family. Then I started working in our hospitals NICU (neonatal intensive care unit). After talking to our neonatalogists about the subject, they all agreed that a doctor telling you to completely stop while pregnant should have their license revoked for malpractice. It is SO much more dangerous to completely stop rather than stay on what you are already taking. After everything I have seen in our unit, it has made me realize that most of the babies with moms who were either on prescribed pain meds or on subutex had little to no symptoms of withdrawal. So PLEASE before any of you pregnant chronic pain patents get scared and go cold turkey, go talk to a neonatalogist about it. Good luck to all of you!!
5/31/11 7:18pm

I did give birth to a beautiful baby girl. The pain meds and my condition had not harmed her at all. We were still debating adoption as my pain was out of control by the time she was born. I was unable to care for myself and my husband was the only one making any money. We had  adoptive parents picked out and they knew we were unsure of our decision, but they knew we had no family or friends to support us, so they were there for her birth, as our friends. They were there for us, even knowing we would most likely raise her ourselves. They brought a lifetime of presents! They were also there for us when she passed away. a few hours later. All the worrying I did about my meds and a blood clot I had passed to her. They were so worried about my clotting disorder, but my body reacted and prepared itself for childbirth and overclotted. There was nothing they could do for her. I am just now able to talk about it. I had 3 wonderful hours where I felt NO pain while holding her. What a gift! I think God knew I physically could not be the mother I wanted to be. The walks, the play dates, the sports, and activities. But HE gave me the greatest experience of my life. To all of you going through the heartache of trying to bring a child into a world of chronic pain, it can be done, it is worth it, and you will not be depriving or harming your child in any way. Being an advocate during the process for your pain is also being an advocate for you child. Thank you all for the amazing knowledge and support. What a difference it makes to know you are not alone. The adoptive parents were the only ones at the funeral with us and their names are on her headstone as her parents as well - they were there for her first breath (in the operating room), her first photo (ultrasound) and her final breath and my mental breakdown. They have since adopted a baby boy. We are the Godparents! Amazing how life brings us together. Jaden is the light of our lives and we get to see him weekly and get a taste of being parents. After my neck surgery, we are planning his first visit to Disney World! It is more for us than him of course!

6/24/11 11:44am

That story was amazing! I have been suffering from fibromyalgia and discs that have ruptured.. It's so hard to validate and explain your pain to others let alone be pregnant and make your decisions to make knowing that people have never walked a day in your shoes and still like to make negative comments!!!! I have been suffering from chronic pain for 4 yrs and married for 6 yrs. Being in pain you experience true love with your partner, my husband has trully excepted me for me. I never thought of having kids but I am 26 now and I feel like this a son or daughter is the next step in our relationship. I have thought about surrogacy but people like you have made me realize there is a light at the end of the tunnel!!

6/30/11 7:50pm

Nicole,

  I can't thank you enough for telling your story. I know this is an older post, but I am pregnant now and have been suffering with RSD for almost two years. I have searched and searched for information on this topic and there is little to be found. Your story and the stories of others gave me a breath of fresh air and finally helped me feel like I am not alone in the search for answers of how to manage RSD pain as well as be able to enjoy my pregnancy somewhat.

  Let me give you a little insight of what my situation is and what I am dealing with at this time. I have endured two miscarriages in the past two years, the most recent was April 17 2011. I was referred to an OB from one of the hospice nurses that cares for my grandmother, who has had very high risk pregnancies and the last time was with twins. The same thing happened with both miscarriages where I began to bleed/spot at around 6 weeks along and eventually passed the baby on my own. The first time, judging from the sac I passed looked to have stopped developing at about the time I started bleeding but I did not pass the sac until about 11 weeks. Same with the second, except the sac was about 3 inches long and pretty large in diameter. I actually dialated at home and had full contractions for about two hours. It was horrific. I had to get the sac out of the toilet because I really wanted to have it sent to pathology and be tested so they could try to find out why I kept miscarrying. The OB that I was referred to said she was familiar with RSD and I explained all the medication I had been on and that I went off of everything except Cymbalta and Oxycodone. She never mentioned me going off of these two medications if I became pregnant again.

  I saw the midwife a few weeks later after I stopped bleeding for a full physical and she said they normally wait until after 3 miscarriages to find the cause but due to my age, 35, they would jump right on it and get testing starting. They took blood samples and before I even was called to get my blood results back I found out I was pregnant again. I would also like to say that with the last pregnancy my RSD symptoms disappeared completely, which was a miracle. However, this time they are still very present and I have had to endure some pretty horrible days. The doctor called me in for my blood results and said she needed to talk with me about some things. Needless to say, I was worried to death. I went in and was told I have a gene mutation called the MTHFR mutation. It is a very long word but the bottom line is that we inherit one gene from each parent of this type and both of mine were screwed up. This causes me to not metabolize folic acid and puts me at high risk for miscarriages and having a baby with birth defects if not treated. After I got home and did some research on the subject I also found that this problem can cause fatigue, anxiety, irritable bowel syndrome, depression, dementia, as well as alzheimers. It also causes blood clotting issues such as thrombosis which can be very detremental later on in life. Also, I read that this can cause neurological problems which really makes me wonder if it had something to do with me getting RSD after my accident. There are people everyday who get injured and heal just fine, why was it that I developed RSD? Who knows, but it should definately be looked into by my doctors. My grandfather on my moms side died from Alzheimers, my grammy has dementia and has had multiple miscarriages in her younger years. As well as, on my fathers side of the family my father died at age 54 from a blood clot that passed from his leg, into his lungs, and then to his heart. My grandfather, his father, has dealt with clots in his legs for years but has caught them in time before they reached his heart. So I feel I really got a double whammy. Knowing this has really helped me tom make alot of sense out of so many health issues I have had, as well as RSD.

  My OB also fooled me whereas, I thought she would help me manage this RSD throughout the pregnancy but instead she said I could only take 650mg. of Tylenlol daily. I cried after hearing that. She said it is mind over matter and I am just flabergasted by that statement. If it was mind over matter I would'nt be taking medication at all, pregnant or not. Sometimes the pain is so bad I literally have thoughts of cutting off both my arms! Obviously, I need to consider a different OB, but where I live they are hard to find for high risk pregnancies.

  My only hope is that my pain management doctor will support me through this. He knew about my miscarriage and he said just try not to get pregnant again but if you do please don't be afraid to tell us. He said he would not take me off everything (at the time he was prescribing me morphine and Opana, as well as Oxycodone) but that he would work with me where I could take something safe for the baby. I just hope he wasn't just saying that and then when I tell him I'm pregnant just decide to drop me. I don't think he will but you just never know. I am praying to the Goddess that he stands by me because my OB is being very unrealistic about this. There has to be some type of medication I can take while pregnant that won't harm my baby so that I can function and not have to lay in bed all day sufferring for the next 7 months. I have stopped taking the Morphine because I read it can cause birth defects but everything I have read about Oxycodone states there is no evidence of birth defects but if taken late in pregnancy, the baby could be born addicted.

  Your stories have given me some hope that RSD can't take away my chance of having a baby like it's taken everything else from me. What if I can't get the support from my OB, should I try to find another one, or just be honest with her about the fact that there is no possible way for me to totally go off all meds. There is also something else she said that bothers me especially with what we found out about this gene mutation as well as, already being high risk for birth defects. She was going to give me the Rubella shot or German measles shot at my last visit. Thankfully, she forgot about it because I stupidly would have let her give it to me. My mother has been a nurse for over 30 years and when I told her about that she really freaked out. She said that it would make me really sick and I just didn't need that obstacle right now until I get out of the woods. Then I researched that and found that this shot can actually cause birth defects and/or miscarriage if given to a woman while she is pregnant. Usually, doctors wait until right after the baby is born so why would she put another one of my prenancies in jeopardy? I just really don't know if she can be trusted with my whole situation. Thanks for listening and any information about this subject is greatly needed out there. I know there are more woman that are going through this and it seems that no one wants to deal with it. They just want us to suffer greatly and I can't imagine that being healthy for the baby either.

 Blessed Be, Jennie

11/20/11 2:41am

I was diagnosed with Fibromyalgia about 8 years ago, however I also have: Endometriosis, Adenomyosis, Interstitial Cystitis, PCOS, Chronic Fatigue Syndrome, migraines and Sjogren's Syndrome.  On top of all of these, I had 2 car accidents back in '92 that have now decided to effect me.  I have had a fusion in my neck and lower back due to Degenerating Disc Disorder and bulging discs.  And now above the neck fusion I have cervical lordosis and below it I have facet arthritis.  So I will probably be having another neck surgery soon.  I just turned 43.  I stopped working in '04.  My pain doctor has had me on several different combinations of pain killers, anti-depressants and muscle relaxants, and I have had a plethora of steroidal injections all over my spine.  My body is definitely dependant on my meds.  120mg of Oxycodone, 240mg of Avinza, 80mg of Cymbalta, 30mg of Wellbutrin and 30mg Flexeril is the latest cocktail that seems to work relatively well, except on the bad days. So my husband and I have been trying to get pregnant for about 6 years now.  We went through several IVF's, but were only able to get one perfect viable embryo.  We haven't implanted it yet.  I had to have the adenomyosis cut out of my uteran muscle last year before we could even think about implantation.  My doctor has now given me the green light.  What I am worried about is all the stuff that I am on.  My OBGYN told me several years ago that she was fine with my current drugs and dosages.  My pain doctor says whatever my OBGYN will sign off on will be fine with him.  But my fertility doctors want me off everything as soon as possible of course.  I have read so many things from people on this site that have given me hope that I should try to get pregnant, but I feel like there has to be a compromise with the meds.  I know I need to at least try to taper down some on the pain meds, but the anti-depressant warnings that are out now scare the "you know what" out of me.  So I am looking for some guidance I guess on how much and when and for how long and what about breast feeding?  What I have that not a lot of others do, is some time.  I have several months before the implant to get to where I need to be on my meds.  However in those months I will have to squeeze in a neck operation.  I know I have been bruatally honest here, I hope that doesn't upset anyone, but I just need help.  Please Help!  Thank you, Julie

11/20/11 4:49pm

Hello!

I am trying to reg for the sight, but for some reason it will not allow me to :(

 

First of all, I think you all are the most strongest women in the world for what you go through and repesent!!! Just because we have chronic pain doesn't mean we don't have the same wants and desires. 

 

I almost 36 (in Jan) and I have a 4 yo little boy, who is the best thing in the world and I thank God everyday for this kiddo and his health. 

Here is my story.....

 

I had a great pregnany, no chonic pain then so that made my preg very simple. About 2 months after I had him my feet started to burn (like I had athletes feet or something) I went and got all this stuff for those symptoms...well needless to say they didn' work. 

 

I let some time go by and just dealt with it. Finally I went to a podiatrist (I worked at Mayo Clinic at the time) well he pretty much said that I need to lose weight and get orthodics. He gave me some over the couter orthodics and I was on my way, back to work. After that appointment I felt really bad about myself, who wants to hear "your feet hurt because your fat" well that I heard.

 

So I let some more time go by (this is now 4/08) I go and see another podiatrist (not at Mayo, they only had the one) 

This new Dr was so nice (didn't even mention my weight, and yes I was over weight..baby weight, but I was not really that big 5'9 and about 180) 

Anyway, he had all these suggestions and tried all these treatments (cortisone shots, steriod shots and meds) well nothing at was working. So, he said that I have what is called Morton's neuroma in both feet (very uncommom) 

I was so relieved that I had a diagnosis!!! This was the best feeling, I even cried. I had surgery for Morton's neuroma in my right foot first....it was pretty hard to come back from.

I had a lot of pain and I was not getting any better....just give it time he would say. Well finally he ordered a MRI to make sure there wasn't anything going on. My husband suggested that I get one on my left foot as well (I was scheduled to have surgery that following week) 

I had he MRI and 3 days before my surgery he calls me in his office and tells me all casually that I DON'T have Mortons Nueroma in my left foot and that I don't need surgery!!!!! WHAT!! ARE YOU KIDDING ME!!!

So, till this day I wonder if I ever needed it on my right foot!??

 

I let it go, never went back to that Dr again and just went on with my life.

I finally went and saw a Orthopedic surgeona(again at Mayo) his assitant did all these little tests and the Dr comes in and says you have small fiber neuropathy....huh????

He got that diagnosis just from that...and he didn't even look at my feet! I left a little irritated! 

Okay, time to move on (it is 4/09) I go and see a neurologist for the first time...he was pretty good  :) he did some testing, he also did a EMG (with electric shocks and needles) he also said that I have some sort of neuropathy. I started taking Tramodol 50 mg (about 200mg total a day) that helped for awhile...well helped me function at work and at home.

 

My husband got a work transfer to Seattle in 5/09, so I had to go and find Dr's all over again. 

I will save you all that long story...you all know what it is like to go on a Dr hunt! 

I found a great PCP and she reffered me to a neurologist, who I would say is one of my fav Dr's of all time (there are only 2 that I really like, and one is in AZ) 

She did a CT and the radiologist that she saw a tumor poss in my chest. I was sent to a Thorasic surgeon and had to have my Thymus gland removed (this was in 4/10, why does everything happen in April haa haa) Anyway, no tumor thank goodness!! My Thymus glad was just twice as big as it should have been (just so you all know, we don't need that as an adult) 

Okay, now I go to a podiatrist (don't recall why) he is a surgeon and he thinks I have Tarsal Tunnel Sndrome (same thing as Carpel Tunnel, but in my ankles) 

Well, by this time I have heard and tried so many things I was thinking "here I go again" 

Long story short had surgery on my left foot end of June and surg on my surgery on my right foot in Oct. I had 3 surgeries in 7 months....I don't think I even was coherent from my chest surgery (I was out for almost 7 hours)

 

okay, I know this is not a book...:) I just have never written all this out before and it feels pretty good! Anyway, four years later I have a skin biopsy and it comes back saying, YES I do have small fiber neuropathy!! 

As of right now there is no reason why I have it or how it came on, they are still testing....

 

My husband and I want another baby so bad it hurts (literally right??)

I am pretty close to adopting (well making that decision) and my husband says to me "I want one of our own"

He is amazing, he has been so supportive and helpful....how did I get so lucky??! And he knows having another baby is either not poss or it will be very hard. So when he says that to me there is no anger or expectations coming from him.

 

Well my nuero says "LETS DO THIS" she wants me to do this if this is something that we (I) want, and it is. She is so amazing, she tells me it is poss and lets build a team. I have built my team and every Dr tells me that I can do it and it is poss.

Well I didn't think it was poss until I read all these posts, WOW what wonderful miracles and  Strength!! 

I am on some meds that I need to wean off of, and yes I am terrified!!! I am terrified of pain for me and my family (they have all been through so much already) I am terrified for the baby and having to be on meds...

The medication my Dr would put me on is Cymbalta...prob is I am on Tramodol and you aren't supposed to take together. I was hoping that the Cymbalta will help me wean off the others. I am also on Lyrica and Oxcarbpazine. 

 

Reading these makes me want to go and get preg right this minute haa haa!! 

I just have to be patient and go slow, there is no hurry. Well I am getting older not younger :) 

 

I would love for my husband to read these, it would show him that anything is poss and if it something we really want we can do it

 

Thank you all for your words of power and wisdom...I actually find you as hero's to my eyes!

Anonymous
Jacinda Cardone
11/23/11 6:07pm

Hi.  I enjoyed reading this.  My name is Jacinda.  I am 30 and this is my first pregnancy.  I am currently 28 weeks.  I have SUFFERED through this whole thing.  My doctors avoid it and won't treat it.  They tell me if it gets bad enough to go to the ER.  So, I will go to the ER and of course they will give me a shot of morphine (it has been the most studied pain med for pregnancy) and then send me home with a small supply of Vicodin, about enough to last me 2-3 weeks (if I use it sparingly once a day when it gets so bad Im gritting my teeth) until the next inevitable ER visit.  Then my doctors will shake their heads at me and cluck their tongues and tell me how bad it is to take pain meds while pregnant.  I use to take nerve blocks, anti-inflammatories, and a flurry of other meds to BARELY manage my pain as it was....and then I found out I was pregnant.  It has been a frustrating, depressing, lonely, judgemental road and I am still on it.  I also use to take Zoloft to manage depression and panic attacks.  I spend a majority of my day in bed, on a heating pad, crying or praying for the pain to subside JUST enough to be able to relax and enjoy this miracle baby that I have been waiting forever for.  This causes me MORE stress, MORE depression, MORE feelings of isolation and fear and loneliness and hopelessness.  I will express this to my doctors and they have offered me counseling.  To me, that is just another reason to have to get out of bed, shower in the morning (I hurt myself everytime I shave my legs or wash my hair), make a painful trip to sit in someones uncomfortable office and talk about something that I FEEL in my body that I am SURE can be treated but no one will help.  I have been put in physical therapy (for the 8th time since my injuries and it has NEVER helped).  I cry quietly as I go through the exercises and listen to the over-confidence of the thearpist that he is somehow going to cure me, knowing this isnt working and in fact for the rest of the day I will be in MORE pain for having to get up, dressed, take the car ride there, sit in the waiting room, and have someone forcefully manipulate my muscles when they have no idea of my condition.  I NEVER NEVER NEVER want to be pregnant again.  I have shame over this.  I wanted this to be something that was beautiful, to bond me to my child and instead I feel guilt when I lay in bed and cry while everyone "helpfully" tells me, "The baby feels everything you are feeling so you should try to relax!!".  I want to give up every day and I fight to smile when she kicks, it is the only moments of joy I have.  I just needed to share this.  I feel alone.

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By Nicole— Last Modified: 04/24/12, First Published: 04/16/07