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    Old 02-28-2008, 04:55 AM   #1
    Michelle94
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    Question for everyone who's been pregnant with RSD

    Hey everyone...
    I have a question for you all.. My daughters teacher (whom Iam friends with) has RSD. She is thinking about starting a family.. and she is so afraid to have a baby or even get pregnant.. So I told her I would ask all of you if you have ever experienced being pregnant with RSD. If so how was it carry the baby? How was the delivery?
    I wish I had some answers for her. I hoping someone out there can share their experience.. Her Dr tells her that the RSD can improve while being pregnant.. Has anyone ever heard of this before? Sounds crazy to me.. but What do I know.. Maybe it has something to do with hormones.. LOL They say that sex is good for RSD.. Well??? LOL LOL
    Michelle

     
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    Old 02-28-2008, 06:54 AM   #2
    sganderson3
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    Re: Question for everyone who's been pregnant with RSD

    Hi Michelle,

    I was pregnant with RSD. Not a good experience for me. My daughter, Trinity suffered. I don't know if this is the best thing to tell your friend. You might want to tell her to get a second opinion. My daughter is now my angel. She passed away during birth. They say it was due to all of the complications of RSD. Can't be fully explained but they say that your baby can feel the pain and can be deformed in many shapes and ways. If you have any more questions, I would be more than happy to answer them. I know this is ruff. I still would like to have another child but I'm not scared to even think about it now after losing Trinity. Just please tell her to check with more than one doctor. I will keep her in my prayers. My husband & I now talk about adoption. My husband knows even if their was a chance of me being able to get pregnant, I would not be able to always be there for our child. It's a difficult decision and I do understand. I am going on 40 this year and still have the urge to want another child. The rest of my family tells me this will pass once I hit menopause. I look at them and wonder sometimes how our we suppose to know if we do go through it. Don't we suffer enough! Anyways, I pray this helps and I pray that she can fulfill her dreams. Stay positive maybe they have something out there that will help her fulfill her dreams.

    Sheila
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    Old 02-28-2008, 12:37 PM   #3
    Gaollan
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    Re: Question for everyone who's been pregnant with RSD

    I had all my kids long before RSD came but I have seen 3 women get pregnant with RSD. They all had healthy babies and also had remission from about 7-8 weeks till sometime in the 6th-7th month. I know one had duragesic patches on throughout the pregnancy and it didn't adversely affect the baby at all. I think toward the end the other 2 also had to take some med.

    They also said that as soon as they gave birth the pain either came back fast or came back slowly. The thing is to have a doc who understands RSD or is at least be willing to learn. There's some things out there on pregnancy and RSD but not a lot. It should be a team effort between the pain doc and ob/gyn throughout and any other doc that would be involved.

    Sheila,*hugs* I am so sorry about your little girl. There are no words really.

    Hugs,

    Karen

     
    Old 02-28-2008, 12:53 PM   #4
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    Re: Question for everyone who's been pregnant with RSD

    Sheila,

    I am so sorry to hear that you lost your baby. I hope you are someday able to have a family and that you feel comfort after your loss.

    Michelle,

    I was pregnant with my 5th child and didn't even know I had rsd. I had not been diagnosed yet, and all my pain went away, so I thought I was healed. I had more swelling in that ankle than in my other one, but other than that, i was totally pain-free. About 6 weeks after I had my baby, the pain returned and was in my back as well. I saw two different orthopaedists, and they eventually sent me to pain management where I got the rsd diagnosis. I have done some research, and some doctors think that the RSD goes into remission during pregnancy because your immune system is lowered to prevent the baby from being seen as a threat. This means that immune responses are lessened too. BTW, my doctor just told me that Interstitial Cystitis ( a bladder disease which I have had for 10 yrs) has been found to be RSD of the bladder. It has long been known that IC improves greatly during pregnancy for most women (me included) This would gel with the findings about remission of other RSD. I would definitely get a few different opinions and consider what body parts are affected by her RSD, but I had about 7 blissful months of no pain and got a beautiful little girl out of the deal. Hope your friend fionds the help she needs to make her decision.

    AM

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    Old 02-28-2008, 01:46 PM   #5
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    Re: Question for everyone who's been pregnant with RSD

    Case and point how we are all different: My RSD defies all other cases any of the over 40+ health professionals that I have seen have attested to that, but when I was pregnant both times with rsd- (actually I was injured when I was unknowingly pregnant with my 1st.) EVERYTHING went into remission. I did not have 1 rsd symptom and I have heard a lot about pregnancy keeping diseases like this in remission. I was in remission for awhile too. No drugs needed nothing. I do not think a doctor can say for certain that rsd causes problems during pregnancy. Both my kids were born early and had complications due to other things than rsd. My advice to anyone who asked me- my kids have saved my life. I can tell you with 99% certainty with the way this disease has effected me I would have been gone along time ago. My kids have been soo supportive and have grown up in an "RSD" enviornment and I and everyone that knows them thinks they are better for it. They help out, have more compassion, and are more tolerant and helpful to people that do need help.
    It was not all roses when I had to have my son put in my arm because I could not pick him up, but I learned over the last 11 years that all said in done I do not regret it. They are my happiness and if I did not have the husbands, kids, and select few that help me I do not know what I would do.
    My heart hurts for baby Trinity and maybe all the problems I had were rsd related, but I do not think so. I had everything that my sister's had when they were pregnant. Placenta previa, toximia, and both babies were taken a month early. This disease takes enough why let it stop a woman from doing one of the most special, precious, life-changing things? That is my opinion.
    Hope all is well in the rsd world and some are getting some hope- peace Nik
    And as for baby Trinity

     
    Old 02-29-2008, 08:36 AM   #6
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    Re: Question for everyone who's been pregnant with RSD

    Sheila, I'm so very sorry to hear about your little girl Trinity. I wish I had something more helpful to say, other than, I'm so sorry for the loss.

    I too am interested in this pregnancy-RSD link. I'm getting married soon, and one thing that I have always known is that I want children, and my fiance loves children...but it's scary b/c so little is known about RSD. He's against my getting pregnant sometimes (like when I'm in a bad flare up) but then other times he's hopeful, but also concerned about my getting off all of my meds before we get preganant....I say, let's just see where things go after we're married, no sense worrying right now....at least that's what I tell myself to stop brooding over it!

     
    Old 02-29-2008, 11:35 PM   #7
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    Re: Question for everyone who's been pregnant with RSD

    Hi Michelle,

    I see you are getting lots of support here. I did want to Thank everyone else for the kind words about my daughter, Trinity. I do agree with many of you that you can't let this disease stop you but I did want to clare up that I do have 2 other children. Boys!!!! 1 is my stepson and the other is my son. I would not know what to do without either one of my boys. I'm sorry for not saying this earlier. I didn't want anyone to think I never had the chance to experience this. My husband & I just really wanted to have 3 kids and have a girl. I know now we still have our little girl in our hearts. She is still loved very much and she looks over us. I just don't want to take the chance again. My youngest son is suffering from leg pains. I have had him into the doctors and they can't figure it out. He was 4 when he started complaining and now is 9 almost 10. I guess this is why I wouldn't ever do it again. Between the loss and my son living in pain. I don't want to see anyone ever have to go through this especially if I felt I gave it to them. I have already went through the guilt about this. Even though my husband many times tells me this is not my fault. I didn't even know I had this disease. He's a wonderful man but our minds do play tricks on us woman sometimes. I'm much better now because of my husband and my son. Even he tells me, " It's okay, MOM I know you didn't want to give me anything". You know how hard it is too not cry or breakdown in front of your kids. I do have to take him back into the Doctors this month (March) and I'm praying for the best. He is very loving and compassionate. He's my other angel. In the meantime, I pray for each of you that do want children that you do without any problems. Children our a blessing. Many people don't understand this but its truly a miracle to go through the whole process of creating such a beautiful innocent child. Many prayers go out tonight to all of you and God Bless each of you. May you all have a wonderful weekend.

    LOL
    Sheila
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    Old 03-03-2008, 12:14 PM   #8
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    Re: Question for everyone who's been pregnant with RSD

    Quote:
    Originally Posted by sganderson3 View Post
    Hi Michelle,

    I see you are getting lots of support here. I did want to Thank everyone else for the kind words about my daughter, Trinity. I do agree with many of you that you can't let this disease stop you but I did want to clare up that I do have 2 other children. Boys!!!! 1 is my stepson and the other is my son. I would not know what to do without either one of my boys. I'm sorry for not saying this earlier. I didn't want anyone to think I never had the chance to experience this. My husband & I just really wanted to have 3 kids and have a girl. I know now we still have our little girl in our hearts. She is still loved very much and she looks over us. I just don't want to take the chance again. My youngest son is suffering from leg pains. I have had him into the doctors and they can't figure it out. He was 4 when he started complaining and now is 9 almost 10. I guess this is why I wouldn't ever do it again. Between the loss and my son living in pain. I don't want to see anyone ever have to go through this especially if I felt I gave it to them. I have already went through the guilt about this. Even though my husband many times tells me this is not my fault. I didn't even know I had this disease. He's a wonderful man but our minds do play tricks on us woman sometimes. I'm much better now because of my husband and my son. Even he tells me, " It's okay, MOM I know you didn't want to give me anything". You know how hard it is too not cry or breakdown in front of your kids. I do have to take him back into the Doctors this month (March) and I'm praying for the best. He is very loving and compassionate. He's my other angel. In the meantime, I pray for each of you that do want children that you do without any problems. Children our a blessing. Many people don't understand this but its truly a miracle to go through the whole process of creating such a beautiful innocent child. Many prayers go out tonight to all of you and God Bless each of you. May you all have a wonderful weekend.

    LOL
    Sheila

    Sheila,

    If you do find out anything conclusive about the leg pains, i would love to hear about it. my daughter is 7 and complains a lot about her leg hurting. Sometimes she doesn't want to walk because it is bothering her so much. I had her long before I got RSD, so i know I didn't pass anything on to her. When I was about her age, I had really bad hip pain. It would pop and burn. my doctors said that my bones were growing faster than the rest of my body, so things were not lined up properly. I did "outgrow" it, and was able to dance all through high school. I was hoping that my daughter might just be experiencing the same thing as she is tall like I am. Anyway, I really hope you are able to find out what is going on with your son. Good luck.

    AM

     
    Old 03-03-2008, 04:34 PM   #9
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    Re: Question for everyone who's been pregnant with RSD

    The pregnancies of both my children brought a remission that lasted quite some time. I would have been a surrogate mother if my health and the babies were not in jeopardy. These were all problems that my 3 older sister's had each had so as positive as I can be they had nothing to do with the disease.
    We even looked for a drug to mimic the hormones of pregnancy because the rsd disappeared. For my daughter it was a long time until I got in a car accident and blew up again. I would recommend it to anyone on many different levels. First rsd is not genetic as far as we know- it is caused by an injury or trauma. Second, kids can take your minds of of many things. They have gotten me up and motivated most of my life. I live for my family, and why let this disease rob you of anything more?
    I almost lost my daughter- she stopped breathing in my arms and could not breathe on her own for 10 days. They told me it was a miracle she survived.
    All kids are angels.
    Peace- Nikki

     
    Old 03-04-2008, 05:15 AM   #10
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    Re: Question for everyone who's been pregnant with RSD

    Sheila and everyone,
    Thank you so much for responding.. Iam going to forward all of this to my friend.. From the sounds of it.. Most of you went through remission.. I find that so interesting.. Lisa(my friend).. was told this same information.. That most women go through the remission while being pregnant.. I hear what your all saying.. Its all worth pain basically. The outcome is the most wonderful thing any women can go through.. Having a I child with RSD just wants to make you fight more.....
    Sheila,
    Iam so sorry you lost that little lady.. My heart truly goes out to you.. No one should ever have to go through that... Please don't blame yourself.. Its all an act of god.. and there are reasons that we all will never know..
    Whats going on with your son? Does he have RSD too? I never heard of passing RSD on to a child.. I thought it wasn't genetic. Did the drs tell you this?
    Nikki,
    YOu had mentioned you were looking for a drug to mimic RSD.. Did you end up finding any information about that? Its just so amazing that pregnancy can do this for RSD... Gosh, Maybe I should get pregnant.. lol lol If thats all it takes.. lol.. Only joking...
    Michelle

     
    Old 03-04-2008, 09:38 AM   #11
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    Re: Question for everyone who's been pregnant with RSD

    Michelle,
    Maybe you should?!? If you are all set and want them. Tell you what I would have had kids for everyone who could not. I would just have the mom and dad's pertri dish and be an oven. I have always thought what a true gift, that would be if only my body would carry them and not put me in harms way. I felt great during pregnancy as far as the rsd and I still today would have another- we try all the time, but my husband ran and got fixed as soon as our daughter was born. He hated seeing what prenancy itself did to my body with my kidneys etc. Anyway Peace!!! Nik

     
    Old 03-05-2008, 05:07 AM   #12
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    Re: Question for everyone who's been pregnant with RSD

    Nikki,
    I was actually joking kind of... Just sounds like an easy fix.. Just to have those 9 months of no pain sounds so good..
    I actually have 3 kids.. 14,17,18.. and soon to be two step children.. Thats enough for me.. You are right though.. They are such a blessing.. They do make get up in the morning.. EVen though they are older.. I still make sure Iam up when they go to school.. My kids are so involved with school and sports.. Iam always going to something at the school.. When I can't go, My kids are so understanding.. I had some tough times with my oldest.. He has alot of anger problems.. especially when going through the divorce.. This is when my rsd was so bad.. I guess all the stress didn't help.. He use to say to me.. Your so &*(%^%... why don't you just take your meds.. Your better off when your one them.. After talking to the school councilor.. She had told me. He was worried about me.. He though I would die from this.. Then where would he go.. Things are so much better now.. Thank god.. He graduates this yr.. Iam counting the months...lol. Such a close call.. He has to pass everything.. Other than going through all that with him.. Having kids makes all the difference in the world with someone who has RSD.. It just give you that push in the mornings to get up and start your day... As for carrying them for someone else.. I don't if I could do that.. I would have such a bond I wouldn't want to give the child back... lol
    I have 4 dogs. They are my babies.. They all keep me so busy during the day.. My friends say Iam nesting.. cause my kids are older now.. I don't think Iam.. I just love animals..
    Michelle

     
    Old 03-05-2008, 04:00 PM   #13
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    Re: Question for everyone who's been pregnant with RSD

    Michelle,
    That's right I knew you had kids-duh. I also remember the divorce didn't I write to you about stuff during that time? I think it was you. Your husband well ex and the girlfriend? would tell you that you were faking and you should get a job. Real Nice. I am all done with ignorant people who want to treat us like we are faking and lazy and the rest. 11 yrs. is enough and I do not even associate with people like that.
    I know about the attachment thing carrying someone's baby and that is why I would HAVE to have it be there eggs and sperm implanted and act like an oven. I think I would always have a special bond and have a hard time, but I would just think about the people I did it for and think about what I did for them. Crap if I got pregnant I'd be in big trouble since my husband is fixed.
    Hope all's well!- Nik

     
    Old 03-06-2008, 04:46 AM   #14
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    Re: Question for everyone who's been pregnant with RSD

    Nikki,
    You have good memory.. That was me... My poor kids have a witch of a Step mother.. I truly feel so sorry for them....
    Lately things have been calm with her... Well only for the fact that I am forbidden to call their house.. My ex feels that all communication should be done between the kids.. LOL LOL..
    Now, he has lost two of his kids.. My daughter doesn't see him. It been a little over two months. My younger son hasn't seen him for almost 2 1/2 yrs now..
    The witch has won.. She slowly made it so miserable for my kids that they just can't do it.... My oldest.. He works with his father.. So everything is for him.. He is to goddess to his father.. Its a shame...
    Its amazing how things can change so fast since I told you all of this before...
    Anyway enough of me...
    How are you feeling? You weren't on here for a while.. I was wondering what happen to you.. Life just gives us so many twists and turns..
    Michelle

     
    Old 03-06-2008, 07:49 AM   #15
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    Re: Question for everyone who's been pregnant with RSD

    Michelle - I don't have any kids (yet) but I do have my "fur baby" - a four year old yellow lab that brings me so much happiness! We recently moved to a different state, so we are thinking about getting a house but are waiting until after our wedding. Once we do - it'll be a fenced yard and a brother or sister for the fur baby! She is so sweet- and seems to always know when I'm having bad pain days- she just is very gentle and lays so still next to me - keeping the leg warm but not jostling it at all! She is my little angel- she's gotten me through many a teary episode -and she's always happy when I'm up - regardless of the time!

    Just thought I'd share... :-D

     
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