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

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.

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