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

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.:hug::grouphug::hug:

Pete

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

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

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

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.

kids
 

I had my 4th when I was 39. Don't give up hope. Linda.

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!!!

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

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

I am the only dissenter ?

My kids are now 13 and 14. I've been dealing with chronic pain (started with TOS and fibro, then RSD) for 5 years. I am so grateful that they weren't babies when this started, there is just no way that I could do what I used to do for them. Most days, I can't bathe and get dressed......how could I possibly bathe and dress kids and get them to school every day?

Are you able to manage all of your activities now ? Are you working ? Can you go 10+ months without meds ?

I wish you luck with this decision......and with your health.

There is no question chronic pain changes our life and the way we use to do things. My kids were a huge part of my life when they were young. They are 21 and 24 now. They are still a big part of my life. I have full body RSD with organs involved. My youngest was a freshman in high school when I was diagnosed. Knowing today how bad my pain can get and how difficult simple everyday task could be. I would have had my kids if I had RSD when I was young. If I were younger and just starting a family I would look at all my options. I would talk it over with my spouse so that he understands the help that may or may not be needed. You may even have family or friends that are part of your support group now they could help you if need be. I would get a referral to a high risk OB doc. he/she can tell YOU what meds can and can't be taken. HAVING KIDS AND EXPERIENCING ALL THE JOY THEY BRING TO YOUR LIFE IS WORTH IT!!!!! You owe it to yourself to check all your options. No one but you really knows how well you tolerate your RSD. Children change your world and put tough demands on you physically and emotionally again I say THEY ARE WORTH ALL THAT YOU GIVE OF YOURSELF!!!!! Don't allow RSD to rob you of something you want so badly, check all your options.
Sherrie

hi there...
 

http://dl8.glitter-graphics.net/pub/...hgyov9zs3h.gif
Whatever decision you make, you have friends to support you,

HiJennelle, Ihave one child, now almostg 30=a joy in our life! I didn't have RSD when she was born-about 15 years later. Even if I had RSD, now full body 13 years, I would figure out a way to have this child. Hope all the best in your decision. These are tough times to live in, but we also have guidance from above and accept help from willing friends. Take care, loretta

Jenelle

I think you need to stop and take a deep breath because you sound as though you are winding yourself into overdrive at the moment and that won't help your pain! I don't have children and have never wanted both pre and post my CRPS diagnosis so Ihave tried to write a deliberately unemotional reply for you so that you can focus, perhaps, on some of the practical questions. I have no doubt that having a baby of your own would be a wonderful experience but the practical realities may be something you want to think about.

If you look at the rsds.org website in the medical articles archive section there are one or two articles on pregnancy and CRPS. However, virtually no research has been done in this area nor is there much reputable information available. it seems that some people may have remission from their symptoms during pregnancy and some don't. You will not get a black and white answer to that question. Like everything else with CRPS it is completely individual - only by actually doing it will you find out what happens in your particular case.

You need to consider whether or not you can manage to come off your pain medication completely for the duration of the conception, pregnancy and any breastfeeding period because most of the drugs used to treat CRPS are not regarded as safe in preganacy or during breastfeeding. Think hard about whether you honestly feel that this is possible for you. If not, do you think it is right to take the risk of having a baby with defects cause by those drugs or is that a risk you feel it is not right to take? It may be a decision you have to make based on having very little concrete information about the actual probability of such risks happening.

Well in advance of any decision, you need to discuss pregnancy with your medical team to see how they resond. If they are not prepared to support you you either need to find a team who will or consider seriously whether you can go ahead. You will undoubtedly need to have a different birth and aftercare protocol to minimise the pain you experience and to reduce the risks of CRPS spread or an increase in the severity of your symptoms. If your medical team won't agree up front to provide you with a suitable care program then is it worth the risk of a birth process that may leave you with much more severe CRPS symptoms in the long term?

Finally, I'd suggest you need to honestly sit down and consider the harsh realities of bringing up a baby with the CRPS symptoms you have. I don't know to what extent CRPS affects you physically and psychologically. Do you have the physical and emotional energy and capacity to look after and bring up a child in the way that you would like to? It may be lovely to have your own child but will the realistic effect be that your own quality of life is drastically reduced by having to cope with the increased demands on you? Will it impose an undue strain on your family, partner and step-children or are they all keen for you to have a baby of your own such that they are willing to share the load without resentment?

You need to openly and honestly think about all of these things and then discuss them with your family and medical team to arrive at the decision that is right for you. I know it isn't a very romantic process but it might help you think through some of the worries and emotions you have swirling around inside you at the moment. You sound from your posts to be in real turmoil and I think it would help you to take 5, calm yourself down and have a think about the practicalities before you go any further.

Good luck

I

gymjunkie

i understand what you are saying. but having done this first hand. with full body rsd. i think that you are way off about the birth defects and all. and how "if" she made this decision that her child would suffer. and i need to say something to that fact. i had rsd before i had children and not one day have my children suffered because of my rsd. yes there may be times that i have to go lay in bed for an 1-2. but i still cook dinner , help with homework, get them ready for school , baths etc. it is possible to have the family that you want and be sick also.

and about pregnancy and meds. there are some meds that you can take while you are pregnant. it depends on the dr's that you have and the meds. i went off the meds except the remaron that i was on for sleep.
i had to have surgery while i was pregnant with my youngest. and was able to have pain meds. mepragan is mainly what you can take.

i think that jennell needs to talk to her spouse and see that they are both willing to make sacarifices because sick or not that is what raising children is about period. there is no being selfish with child.

i think that you had great points gymjunkie but i think that somethings you said IMO are not correct.

carrie

I am not a mom and do not plan on having kids but that was before this. I do have a few feelings on this. First I think right now you are in a position Jenelle where you may have some un dx condition,the spreading,and also treatment directions like the scs. A lot can change over the next few years to where you could be in a much better place if you are under the right treatment and have more direction. I understand being 30 but really people in general are having kids later. I also would not go into having a child with the idea of it helping the rsd cause there just is not enough evidence. I also would look at things like the other poster said med issues,finance issues when not able to work,and just day to day care of a child. I think it is one thing when one has kids already because the child has to adjust but another to bring a child into something like this. I feel that way about sig others. It is one thing to have a spouse or bf stay once they have been with you for awhile but another for someone to be brought into this pain but at least as an adult they have a choice.
I think that you are one of the most kind hearted people and I am sure you would give so much love to a child and I know would want to do the best for everyone so what ever you decide I would support you in any way I could as a friend. Just a few of my concerns and thoughts

Hi Carrie

I'd just ask that you read what I said carefully - I didn't say that taking meds during pregnancy causes defects - I just said that there was a risk with "most" of the drugs that are "commonly" used to treat CRPS and you have to weigh up whatever that risk is. The risks might be really low and they might not - it depends on the specific drugs and the circumstances of each woman. Some people won't regard any risk at all as worth taking and some people will feel that it is a low risk which is worth taking.

I absolutely didn't say that if a woman takes medication during preganacy that her child would suffer - again all I said was that there was a risk which each woman has to weigh up. I also didn't say that a child would suffer because its mother has CRPS. I said that each woman has to weigh up the lifestyle and quality of life that she has along with the amount of pain and disability she has and decide for hersef whether she feels it is right for her to have children. For some women it will simply not be something that they feel they can manage on top of dealing with their CRPS or they may not feel that they can give a child the lifestyle that they would wish to give that child. Others will feel very differently.

I am happy for you to disagree with me but I just wanted to be completely clear about what I was actually saying.

This makes a lot of sense to me.

Anti-convulsants for instance (like Neurontin, Lyrica, etc. ...), those are wellknown meds for RSD. Well, you cannot take them through pregnancy because they can cause serious birth defects.

I saw this in a Dutch documentary once. It was a woman with a serious form of epilepsy. She tried her hardest not to have to take the medication, but in the last trimester she did. She had to. The baby was born with a disability of the hands.

It is no longer about you, I agree, it's about the health of new life and if that cannot be guaranteed, then why take the risk? Being a disabled mother is challenging, but it's even worse being a disabled mother to a disabled child.

Hi,
 

If you can get the RSD into remission or at least calmed down then it could be that it would stay in while you are pregnant even if the pregnancy doesn't put it into remission for those 9 months.

I do feel it's important to at least try to get to where you can live with the pain both mentally and physically before you decide to have a baby.

In that article that we have talked about today, it talked about people who thought of suicide because of RSD. If you pain level gets out of control moreso after the baby comes then you have to worry about dealing with the pain as well as the baby.

Take it one step at a time, marriage along with getting the RSD under some control and then a little angel.

Ada

gymjunkie

i wasnt tryin to attack you sorry.. just nicely disagreeing. as i we talk about this today i have a friend that just found out that she is pregnant and they have told her that for her that there is some of the anti seziure meds that you can take while pregnant .. she will be meeting w her neuro..

but like ada said you jenelle i would at least try to get you rpain under control as best as possible before becoming pregnant because like we said there is no guarntee that you will have remission there is so little research out there about this subject that there needs to be more research period on this subject.