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


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Old 05-17-2009, 03:46 AM #1
Jennelle Jennelle is offline
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Heart to all you mom with rsd help me I am scared

No I am not currently pregnant but am planning to get married soon (after 3 yrs) and we both want another child. I heard a rumor that rsd goes into remission from pregnancy.....is this true? I just can bear the thought of not being able to care for my own child that i have waited so long for. I will have had rsd since June and postponed my wedding over it. And now i have all 4 limbs affected. Any advice, during after, what to expect....oh yeah i also have a herniated disc in my lower back. PLEASE MOMS...HELP ME OUT HERE. iS I EVEN POSSIBLE? How do your meds worki.......I am and if I want to try time is flying...my soon to be is 38. All my life that is all I have wanted is a child of my own with a man I love. I even went into pediatric nursing just to be even more prepared. So good, bad, ugly put it out their for me.
Hope you all had a happy mother''s day
Jennelle
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Old 05-17-2009, 04:11 AM #2
AintSoBad AintSoBad is offline
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Hi Jennelle,
It seems we're both awake tonite!
While I can't help too much on the pregnancy and delivery, I can tell you this.
I had two children who grew to call me Mr Mom, my first wife left, when my doctors decided I needed to go on Methadone. (She wouldn't be married to no drug addict). So, I wouldn't give up my kids! Son, 5yrs older than my daughter. I took them to school, and drove them home. It was a small private school, and a parent was expected to be involved. (Mom's), this is back during the entire 90's. I was a school parent, and went out outtings, even cooked the school lunches. (a really funny story there)...
I suppose what I'm trying to say, is that it's amazing what you'll overcome for your child(ren). What "fire" you'll walk through.
And, I did.
Mornings were toughest for me, and I was running a business. My little daughter got adept at bringing me a cup of tea, so I could get moving, take my meds etc.
( a Psychiatrist was a great help during this time). Because, it DOES get tough!
But, it's truly a labor of love!

With my tbi, their mother's hatred, and other circumstances simply beyond their and my control, my children no longer speak to me, I'm absolutely heartbroken to say...
Never, would I have guessed this could have happened between they, and me. Never!
But, Satan keeps throwing rocks of fire, and we fight with love, and faith, and, while we don't speak, I love them, they love me very much. I understand I'm even a grandfather now too.

Jennelle,
You just have that baby and love that baby!
You'll do fine! Make a real "Loving Family"!
Oh, as I said, someone else is going to have to help you with the pregnancy/delivery.

Pete
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Old 05-17-2009, 07:06 AM #3
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Default Hi Jenelle,

Since you are almost a year into your RSD, your soon-to-be evidently understands what you are going through by now and is ready and willing to be there for you and to help you, then marriage is definatly in the cards. He's old enough also to understand that you do need the help with a child when you have one.

I was a Grandmother at 43, already sick from other things, and it was very hard for me just being a Grandmother. Bill was 10 years older then me and he had become disabled before me but was getting better to the point that he couldl help with the boys when they came along. I was sick from childhood so had it not been for him, even raising our daughter would have been a task for me alone. He was as involved with her life as I was. To this day, she is a Mama's and Daddy's girl. Never moved away from us but for 6 months after marriage and then came they moved back by us.

We were at the hospital the days the boys were born, they had their room at our house and I still to this day, keep them 2 nights a week. They are going on 15 and 16 now. I wouldn't have been able to take care of them though had it not been for Bill again. He kept them busy when I was sick which was about 10 years. After he passed away, boy did I have to bounce back. Now I do what he did with them. It's not always easy but I do it. They call and I'm there. I go to their games, singings, plays, you name it. It's like I got a second wind.

I guess what I'm trying to say, IF your boyfriend is very helpful to you and knows where you are at this juncture of your life and helps you then I would say go ahead with marriage.

A lot on here have little ones, they can tell you their view. I would say with having a baby, I would make sure that I am in a good place with the RSD. Make sure that you have good Drs. lined up, good Physical Therapist, and good councelling if you need it.

IF the boys had been mine and I had them all of the time when they were little, I know I would have had a time taking care of them. I can remember sitting in a rocking chair with both of them on my lap and being in so much pain, I was suicidal. As I said, I was dealing with other issues also healthwise. Bill was my lifeline though. Travis married Susan when the boys were 3 and 4 and he told me that they were their responiblity and that they would not put them off on us like Susan't ex did after Susan went to work. He stayed true to his word, we got them when we wanted them. Travis was a lifeline for me too and so was my PCP so it took a village in my case to help take care of the boys.

Kids are the greatest joy a person could ever have but you just have to make sure you are in you are in a good place with the RSD.

As far as pregnancy, some do go into remission but from what I understand from here on the board, some don't. I know they will come on here to talk to you.

This is just my perspective.

Good luck on your new life.

I do want to add Jenelle that God threw me these lifelines. I have no doubt on that.
Ada

Last edited by dreambeliever128; 05-17-2009 at 08:37 AM.
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Old 05-17-2009, 10:26 AM #4
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ok here is my advice i have had 2 children and have had rsd since before they were born.

yes SOME go into remission i didnt but my pain was less the second pregnancy not so much the first one.
like pete said mornings are the worse for me even now they are 9 and 6. . pregnancy was alittle ruff both times. i already had full body rsd it wasnt internal till after my oldest was born because i cant have natural delivery. i have to have c sections. and thats when mine spread internal. some have had the c section with no recourse.

but you learn to deal with babies and children with you have RSD it is also a good tool for desentizing you to touch and feels of certain things.

in my expericenes it helped me also to learn to live with the RSD better because you have no choice as a parent . does that make sense.

diana is also a talker on this subject but she is on vacation right now. she had just got RSd after her youngest was born .
i was 16 when i got RSD so i had it for 2 years before my oldest was born. but i say this all the time to people dont let RSD win live your life. if you want kids have kids. your docs may not be so happy about it. but the good ones understand

any other questions you have you can always PM me

carrie
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hope this finds all in less pain
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rsd DX 99 had since 98 full body and organ involement,fibro ,pelvic pain ,etc,,,,,,




please check out our website to help bring awareness to RSD!


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Old 05-17-2009, 12:10 PM #5
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Default Hi Jenelle

Jenelle,

First, I have 4 children, all post RSD. But, after my first 3 I received a traumatic injury to my neck which caused TOS. I spent a 3 years of surgeries until I was "better". I was on so much medication I had to go to Columbia Presbyterian in NYC for 2 weeks to get off all medication. I think I have said on this site but, I was admitted on September 10, 2001. I watched from my hospital room the second plane hit the World Trade Center. Bad enough being taking off all meds, having to witness that was horrible. I knew people in there. It was horrible to know my husband was home and having to take my children out of there schools due to terror. We live in an are which is in a Army and Naval Base area. All the military children were being released also. I had no contact due to phones.

Sorry, I got off track.

By the time I was home, I felt great and was able to, unexpectedly get pregnant in 2/2002. We were surprised but happy. She was born by C-section 11/15/2002.

I then since have relapsed.

I think what I am trying to say is that anything is possible. I find my lilttle girl the greatest gift. I feel I was allowed that window of being pain free so I could have her. Have faith. Make sure you have a doctor who understands and you will be able to accomplish it. And as the others have said, you'll need help but ask and accept what is offered. You won't regret it. My 3rd learned at a young age to help me or do on his own when I couldn't. Even now, I get up with them for school but can't always make breakfast. I'll sit on the couch and talk to them while they do it themselves. It does work out.
You can do it! Linda
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Old 05-17-2009, 01:14 PM #6
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I don't think I should hope for children anymore. I would have liked to have had at least two, even with RSD. Then last year, the RSD spread to my arms, and my hope for kids got to be even lower. Other than that, I am getting to be 37, pretty soon it's going to be over and there's nothing happening in the relationship dept.
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Work related (car) accident September 21, 1995, consequences:
- chondromalacia patellae both knees
- RSD both legs (late diagnosis, almost 3 years into RSD) & spread to arms/hands as of 2008
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Old 05-17-2009, 02:32 PM #7
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I had my 4th when I was 39. Don't give up hope. Linda.
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Old 05-17-2009, 03:06 PM #8
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Hi Jennelle,

I have no experience in dealing with kids and younger children (far too young to be thinking about that lol) but I just wanted to say that I agree with what the others are saying. Don't give hope that you can't do something because of RSD - if you want it that much, you will do it!!!

There are so many groups and organisations that can help now with raising kids that might be able to help you and offer you some help and advice.

You are doing the right thing in speaking to others with RSD but please, don't ever give up hope!!! I know it is hard at times but I have heard from so many people on here and other forums like it that have had children, even with full body RSD.

I got RSD when I was young (12) and I know one day, I will want children when I am older. You cant let RSD stop you from doing the things you want or put your life on hold. It will be hard but i'm sure it will all be worth it and you have others that can help you!!!

Take care and I wish you the best of luck!!!
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Old 05-17-2009, 03:23 PM #9
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Hello Jennelle,

Kids are a blessing from God. You and your husband need to make the desicion if they are right for you. There will be days when you will need extra help and don't be affraid to ask.
It sounds like children are very important to you and you will make a great mom. I agree with Carrie don't let RSD rule your life. It takes enough from us you need to control what you can in your life.
Talk with your doctors and ask for a referral to a OBGYN that handles high risk pregnancies. My daughter in law sees one she has a heart problem and is due in July.
Don't give up on your dream to have a child. Talk with your doctors and your husband. Make sure he understands at times you will need additional help.
In the end you find it is all worth it. There is nothing in life that can compair to the joy a child brings to your life.
Take are,
Sherrie
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Old 05-17-2009, 06:35 PM #10
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i agree with everyone. IT IS WORTH IT!!!!
even tho it is hard sometimes its worth not putting my whole life on hold.
like sherrie said i would find a high risk obgyn because there are many problems that can arise. i would think it over and make sure that its right for you!!!

carrie
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rsd DX 99 had since 98 full body and organ involement,fibro ,pelvic pain ,etc,,,,,,




please check out our website to help bring awareness to RSD!


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