RSD/CRPS and Pregnancy
 

Hi all. I was diagnosed with RSD when I was 13 and am now 21 and newly married. My RSD is in a full blown rage currently and like I said I'm only 21 and newly married so I'm not ready to have children yet but my husband and I are interested in one day becoming parents. My doctors have told me that RSD and pregnancy are not the best combination and that since I do have the desire to adopt one day that I am probably best to stick to just that. I was wondering if any of you have experienced pregnancy after an RSD diagnoses and how that experience was. Do you feel it was harder on your body due to the RSD? How did you manage your pain during pregnancy? Did your RSD flair up during or after your pregnancy? How have you managed to balance parenthood and pain? Do you have any advice for someone going into pregnancy with RSD? There is such limited research online about it and I am just curious how it plays out for the majority. Thank you.

I have no personal experience but have researched this as well.

From a pregnancy standpoint...many people with RSD actually experience REMISSION in pregnancy. It typically comes back after the baby is born but many actually experience less pain while pregnant.

It's the AFTER part that terrifies me. Flares can be caused by the tiniest things and little ones are so unpredictable. I have zero doubt in my mind that caring for a child would cause me a significant increase in my pain levels. I would worry about my physical ability to care for a child. I know when you are a parent you can do anything when it comes to doing what you need to do to care for your baby...but I just worry about not physically being able to do it.

Hopefully someone else chimes in with more personal experience as mine is just based on research and my own fears on the subject...

same concern rsd/pregnancy
 

I share your same concerns, and I am also looking for more info. Everyone hears about swollen feet during pregnancy, and swelling is what seems to trigger my RSD in my left foot. I am 34 and feel like I need some answers soon, and whether I need to consider other options such as adoption and/or surrogacy. I will keep checking your thread to see what kind of answers you get. Thanks for posting. I feel ya!:rolleyes:

I've had 2 children, thankfully before my CRPS...so I can only speak in terms of how I think the CRPS might affect things.

Like catra, I've read that the pregnancy hormones can actually help with the CRPS, but that afterwards it might go back to the original volume, so to speak. Your intake of meds might be problematic, depending on what you take at the moment, and you might have to reduce or stop some of them. A member called Allanira recently went through this and posted some really useful info during her pregnancy.

I think much of it depends on where and how you are affected by CRPS. Small babies don't sleep much, and being sleep-deprived is pretty tough even when you're healthy! When they are tiny, changing and feeding isn't too physical, but as they grow you do need to be able to carry them, and there is always a lot of bending down and lifting...:rolleyes: toddlers weigh a fair bit! Even getting a baby dressed and into the carseat can be hard work at times. Household chores increase and definitely seemed much tougher for me with a little one. I was pretty energetic back then, and the smallest things can make me exhausted now. The 1-3 yr old phase was hardest physically as you can't yet really get them to understand a lot, and they can be frustrated by their own limitations. Physically that can be hard on our body if you need to restrain them for their safety (ie crossing the road) or deal with a tantrum.

I'm not trying to put you off! Children are amazing things, and I don't regret anything, but it's good to be realistic about the tough parts. I'm sure there are ways around a lot of them, with imagination, cooperation of friends and family, and planning. It's just the great unknown of how bad your CRPS can be, and whether you can deal with still having to do all the daily stuff of caring for a child while going through that. It's always going to be a very personal decision, and I really hope that you can find a way through it to a happy conclusion.

Sorry you're having such a bad flare, and I hope things settle soon. Congratulations on your marriage! :)

Bram.

I got rsd a few months before my son started college. He is twenty now and finishing college this year. He is going to start working and have his own apartment soon. So he is not going to be home much more. He's all grown up and starting his own life. When he does come home he is very self sufficient. But I find that even sitting with him for dinner and watching tv takes its toll on me because of my rsd. I feel constant burning and aching pain and stiffness even with my meds. They help, but don't take the pain away completely. All I want to do is lie down and put the heating pad on. But I push myself to sit with him because I know the time I have with him is so short and I miss him so much when he's gone. I try to cook him his favorite meals, but I find that that's even difficult to do. I tire very easily and trying to pick up an oven stuffer chicken to clean is very painful for me. I almost dropped it and had to have my husband help. I thinks kids are the greatest, but personally, if I had rsd before I had a child or when they were young and still living at home, I don't think I could handle taking care of them with rsd. Adoption would probably be my second choice. But everyone is different and maybe your rsd will go into remission. I hope that whatever you decide, you can find happiness and joy in your life with your husband. Take care. My thoughts and prayers are with you. Sincerely, Renee.

Hello, I've been through 2 pregnancies with this evil disorder. You have a 50 50 chance of going into remission. I went into remission with my oldest son but not so much with my youngest. The factors you need to think about are : Are you able to stop treatment for 9 months? Most PM Dr's WILL NOT treat pregnant women. They are afraid if something happens they will get sued. 2nd if you have to have a C Section will you have help for at least a month after the baby is born? I had a normal vaginal birth with my oldest and a C Section with my youngest. My C Section reopened after a week and I had to treat it and get it to heal completely on my own. 3rd is are you going to breast feed or use formula? I breast fed my oldest for a month then switched to formula, and pumped till I started treatment with my youngest. He is now on formula only. My crps is in my left leg. So I use a cane. I have all of the stuff I need set up around where I am on the couch. The only thing I don't have are the bottles ready because they can go bad if they sit too long unless they are refridgerated. I do have them set up and just have to put the he powder in them. I have the wipes, diapers, and powder ready to hand so I just have to sit up and get him sorted. My toddler takes off with my cane all the time but brings it back too. I have snacks and drinks set up by me for him also. He plays right beside me and even gets up on the couch with me. He throws away trash and dirty diapers for me also. It is hard sometimes getting my toddler in and out of my truck but it's also a high vehicle. Getting them in and out of a car is easier. I wish you luck with what ever you choose. If you have any more questions give me a holler. My oldest son is 2 1/2 and my youngest is 1 month. I wouldn't trade them for the world.

As others have discussed to.....there are 2 major issues to consider:

How you will manage pregnancy. If you are lucky enough to go into remission with pregnancy, that's a plus. If you aren't that lucky, can you manage with only pregnancy safe meds for 9 months ? RSD can spread on it's own, but it often does after any other kind of injury. Both C-sections and normal vaginal births involve damaged tissues that could trigger a spread.

How you will manage the care of a child on top of your chronic pain issues. I haven't been able to manage household chores on a regular basis since I developed RSD. I can't get dressed or drive most days. I require 10+ hours of sleep or I have severe headaches. I could not manage the care of a newborn or small child. My children were older when my RSD hit and their lives have still been traumatized by this. It's almost 10 years now for me. In that time we haven't been able to invite anyone over because the house looks like something out of a Hoarder's episode. I wouldn't wish this on anyone's childhood. Are you still able to work outside the home and do some of the housework now ? Will you have A LOT of help, not just after the birth, but for years to come ? I'm assuming your new hubby is far more supportive than my jerk is, but is he fully committed to not just being supportive of you, but probably taking the reigns and managing many things that are "typically" the mom's job ?

There's a lot to consider. I hope that you and your husband make the best decision for your family.

That was exceptionally well said, Bram ! Well done, as usual :)

Pregnancy, RSD, Fibromyalgia, Interstitial Cystitis & Endometriosis
 

Hello all.... I don't usually post, but after reading your thread & seeing so many young women wanting answers or advice, I felt I should! I was diagnosed with severe endometriosis when I was 13, & RSD, Fibromyalgia, & Interstitial Cystitis when I was 18. I am now 33 & as any of you with these pain diseases well know, the last 15 years has been filled with pain, hospitalization, being a guinea pig for meds, a string of doctors or nurses who don't understand or care to learn about them, depression, etc. I was told at a young age I would never get pregnant. Well.... SURPRISE! I am now 24 weeks pregnant! I thought I had the flu & a bad flare. My periods have never been regular, sometimes bleeding for months on end, sometimes disappearing for.months. This pregnancy was a HUGE SHOCK! I will not say it is easy. But YOU CAN have a baby despite these diseases! Yes, it threw me into a huge flare. Yes, it is painful. But it can be managed! My OB upped my Gabapentin to deal with pain since you do have to drop all anti-inflamitories & strong pain meds. It is hard, but my baby is perfect! There are meds that won't affect the baby & can get you thru it. I was adopted myself, & spent many years trying to come to terms with the fact I'd never have a baby of my own, someone who might look like me etc. Especially now at age 33, I'd accepted I'd just be that eccentric Auntie who spoiled her nieces & nephews. I wish someone had at least told me that there might be a chance one day to be a mom. I am all for adoption, but I hate for such young girls to think they have been robbed of their chance at pregnancy because they are in pain & are disabled by these awful diseases. You need to find an OB that understands these conditions & the pharmacology of medicines that can help you but not hurt the baby. This isn't easy, but it's possible. Your partner needs to understand that you may be nearly impossible to deal with & incredibly snappy & in flares for 9 months & willing to support you as you learn to deal with a new baby & your pain. I know I'll need help adjusting at first, but this pregnancy has taught me that there is always a way it can be managed. I may not ever be a mom who can run around on the playground with my son, but I KNOW that no one else could love, nurture, or teach him better than me. I can share my intelligence with him. I can teach him that no matter what life throws your way, you can overcome it. I can teach him that strength doesn't have to be physical, it can be the strength of love, intelligence, character & compassion. Yes I am in more pain than ever before right now, but I have something incredible to look forward to in 16 more weeks! :)

weigh your options carefully
 

I have had 2 successful pregnancies prior to my diagnosis of CRPS since 2006. My older boys are now 21 and 11 and when my youngest was only 1 years old this crazy disease took hold of my life. In the beginning it was difficult, but I really did well as far as taking care of them, my house and working full time. 7 years after being diagnosed, my husband and I wanted to have another child. We were hoping for a little girl :) So together with my OBGYN who researched CRPS, we went ahead and did treatments for me to get pregnant after trying for over a year and not getting anywhere. I was feeling like I was getting older by the second and it was the "time" for me to have another one or else I wouldn't want to have any more because I knew that as time went on that my crazy disease would make it more and more difficult. So.....in 2013 I gave birth to a BEAUTIFUL healthy baby girl. I was told by my OB, my PM and my pediatrician that I needed to continue with my medications because if I stopped, the chances of losing our precious baby in utereo was very very high. At the time I was only on Oxycodone and Klonipin. They did not want me to take any of the other medications that they had prescribed. They also monitored me much more than a normal pregnancy one because I was older and two because of the disease and meds. So obviously I was considered VERY high risk. I was also told that I needed to breastfeed her because she would essentially be born like a "crack" baby and weaning her early on as an infant could possibly put me into major flares because of the effects of not having the meds in her system. So I did as I was told, really didn't have a "bad" pregnancy. It felt different from my boys as I was way more nauseous. BUT I completely went into remission during my pregnancy. It was wonderful because for the first time in for ever I didn't feel the burning pain that was always constant with me. I continued to work all the way up until the day I gave birth and I was only out on leave for 3 months when I returned to work. I would wake up at 0500 to nurse her, pump right after, get ready for work, have some coffee and breakfast and get her ready for daycare and was out the door by 0630. I don't know if the euphoria of it all over took me but I felt fine for a really long time, maybe a year or so and then after that year was up this evil disease came upon me with a vengence. I was under a lot of stress at work as well so maybe that's a reason too but oh my goodness it was really bad. She is now 2 1/2 and will be 3 in June and I have been in a major flare for over 3 months now. But she is much more independent and I have my husband and boys to help when I'm in too much pain to deal with the world. She still nurses at night....mostly for comfort than anything else and that alone is painful but I have to really just bite thru it and push thru the pain because I have no idea how to get her off my boob! :confused: I would offer this to you.....it is not a bad idea for you to decide to have children of your own but you also need to weigh in all the factors about this disease and how it will affect you. You may be like me and go thru a remission while pregnant but do you have tons of support to help you when you give birth and this evil disease comes back to shatter your happiness? Talk to your PM doc as well as your OB and look for a pediatrician who is willing to research the effects of CRPS on your baby. Do TONS of research first before diving in. It's not easy having this disease and then adding on a baby. I wouldn't take any of it back because I have been tremendously blessed to have my mini me but like I said, it's not easy and there will be days where you just cant do anything and thats including taking care of your kids. I do hope you have the support you will need from family or friends because you will truly need it!!! So please weigh your options carefully. There are days where I can barely interact with my family and I am stuck on the bed in pain. They deserve to have me be apart of their lives and I deserve to be there as well, but sometimes I can't and that makes me so very sad and depressed. Good luck to you in whatever you decide to choose.

Thank you
 

Thank you all for sharing your personal stories on pregnancy. I am 35 and the past 6 months I have been mourning that part of my life because I know deep down in my heart that I won't be able to be the type of mom I want to be.
I've had an amazing life with traveling and putting my career first and have accomplished everything I put my mind to.. I always put the thought of having kids off because I wanted to wait until I was..surprise..35. Well now I am here and I have this awful disease. It's something I am not willing to go forward with because the pain has changed me so much. My boyfriend who I live with has joint custody of 2 kids from a previous marriage and it is all I can do to tolerate the noise, chaos and level of parenting that a 4 and a 8 year old need. I know it would be different and I would probably be more tolerant if they were my own children but the level that it triggers pain is not something I want to explore.
I've sadly grown envious of the other pregnant women at work and I've withdrawn from helping out with the parenting of my boyfriend's kids.It may be just a phase in the grieving process but it is just a reminder of a joy of life that I will not be privileged to experience.
I think it just comes down to what you know in your heart to be true and listen to your body. Parenting comes in many forms and for some, there are different approaches that work but personally I know that it would unfortunately exacerbate symptoms for me.
Goodluck to all of you being brave and courageous to take this on.

Inspiredtoday, thank you for sharing that with us. I too have been going through regrets of not having children when I had the chance as well. I am unable to have children anymore, and every time I have brought up even the thought of adoption, I was told no. We are too old, too broken or too pore. Although it was probably the right choice, as I can not see being able to take on the responsibility of raising a child and dealing with CRPS as well, it has been an emotional struggle for me coming to accept not being able to raise and teach a child, give them my love and affection and show them life. That I will not be able to see the wonderment of a child's eyes as they discover so many new things growing up. To be able to take pride in knowing that I left an impression on someone that I meant so much to and means so much to me.

When it gets the best of me, I try to think that I am lucky enough to have 12 nieces and nephews whom I can still be a big part of their lives. I can still see, and have seen, them grow in to young adults. I can try to be the best aunt that I can be when they are around. I don't have to worry so much when they come home late after a night out with friends, or when they are catching a cold. I can leave most of the stresses, problems and difficulties of raising a child to my sister, sister-in-laws and brother-in-laws and only worry when I hear one of them call late at night. I can enjoy having them over to visit and share the moments I have with them. There is nothing stopping me from still doing all of those things every chance I get.

Wow, we have almost all the same issues, diagnosed around the same age. Thank you for your post it gives me hope. And I sincerely could not agree more with everything that you said. I'm really praying that by getting pregnant not only does it help with the Endometriosis but with this awful disease as well. From all the research that I have done, different Doctors I've had the pleasure of speaking with, informational videos, and a little hope I really think that it could help. I'd rather continue with any natural treatment I can, then putting anymore toxins, pills, invasive procedures, surgeries, skin grafts, etc. into my body. I'm already in excruciating pain as it is 24/7, so to me its worth the risk.

Carlee. I have great news for you. I am 44yo and was in a near vegetative state for 4.5 years with SYSTEMIC RSDS& SYSTEMIC Autonomic Neuropathy. Now i had only began learning how to walk again Jan2012. I got pregnant July 2013th. i had alot of problems with preterm labor as you know that your body over reacts to stimuli. WELL< my son was born at 34 weeks and He was small, but healthy. And heres the great news, my pregnancy put me into a remission of sorts. I got stronger, my pain was manageable at 25mcg per 48 hours of fentanyl which i began at 125mcg per 48hours . SO yes, great news is that pregnancy can put you into a remission ( As you know our remission is not total remission, but functional compared to nonfunctioning) Anyway i stayed in this highly functioning state for nearly 3years until i got pregnant with my 3rd son ( 2nd baby post RSDS ) and his deliver was horrible he was dead due to shoulder dystocia and they caused alot of trauma to my rectum and pelvic floor trying to get him out to resuccitate him . THEY DID> HES PEFECT NOW> HOWEVER< the trauma i suffered physically during his birth has me in almost full blown RSDS again. Im trying to get pregnant again to force a remission as im terrified ill end up where i was before and i have these 2 young babies that need me. Ronin is 4yo and Kade is 20mo now. They are jumping at me now which is why the majority of this is spelled improperly and lets not talk about punctuation lol. ANYWAY GO FOR IT AND IF YOU GET PREGNANT< KEEP MOVING> ALWAYS KEEP MOVING NO MATTER HOW MUCH IT HURTS> The reason i was fully bedridden is because i spent 7weeks int he hospital and they did not move me becuase it hurt sooo bad. BUT THATS WHAT CAUSED ALL OF MY JOINTS (ALL) of them to go into full contracture. I WAS FROZEN BUT FULLY MENTALLY AWARE OF WHAT LIFE I WAS MISSING AND JUST WANTING TO DIE> IT WAS HORRIBLE< SOOOO KEEP MOVING PPL> IT WILL HURT AND HURT BUT IMAGINE BEING FROZEN BUT AWARE> KEEP MOVING OK AND IF YOU CAN GET PREGNANT< MAN< GET PREGNANT> I wish i understood why it puts you in remission, but i think it may have something to do with the higher functioning immune system. NOT SURE< IF YOU KNOW ANYONE< NEUROLOGIST ETC>please please tell me. THank You..... and good luck lovey, Deeba:p

Pregnancy doesn't put everyone into "remission", I'm afraid, so just blindly encouraging women with CRPS to get pregnant, to me is a bit much. :o

I'm almost menopausal, myself, so pregnancy is OUT of the question for me. I have never had the "opportunity" to get pregnant either.

There is no "cure" for CRPS. Pregnancy is not a treatment.

I am glad though that your outcome has been favorable. I hope you will continue to do well.

Unfortunately that's not very realistic for some of us.