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)


advertisement
Reply
 
Thread Tools Display Modes
Old 07-20-2013, 03:18 AM #1
cartee4613 cartee4613 is offline
New Member
 
Join Date: Jul 2013
Location: Northern California
Posts: 6
10 yr Member
cartee4613 cartee4613 is offline
New Member
 
Join Date: Jul 2013
Location: Northern California
Posts: 6
10 yr Member
Heart 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.
cartee4613 is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
Inspiretoday (02-23-2016), mlerae (01-21-2014)

advertisement
Old 07-20-2013, 04:31 PM #2
catra121's Avatar
catra121 catra121 is offline
Senior Member
 
Join Date: Jan 2010
Location: Illinois
Posts: 1,785
10 yr Member
catra121 catra121 is offline
Senior Member
catra121's Avatar
 
Join Date: Jan 2010
Location: Illinois
Posts: 1,785
10 yr Member
Default

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...
catra121 is offline   Reply With QuoteReply With Quote
Old 01-21-2014, 04:12 AM #3
mlerae mlerae is offline
New Member
 
Join Date: Jan 2014
Location: Seattle, WA
Posts: 4
10 yr Member
mlerae mlerae is offline
New Member
 
Join Date: Jan 2014
Location: Seattle, WA
Posts: 4
10 yr Member
Default 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!
mlerae is offline   Reply With QuoteReply With Quote
Old 01-21-2014, 08:29 AM #4
Brambledog Brambledog is offline
Senior Member
 
Join Date: Jul 2012
Location: England
Posts: 1,122
10 yr Member
Brambledog Brambledog is offline
Senior Member
 
Join Date: Jul 2012
Location: England
Posts: 1,122
10 yr Member
Default

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... 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.
__________________
CRPS started in left knee after op in Aug. 2011
Spread to entire left leg and foot, left arm, right foot.

Coeliac since 2007.
Patella femoral arthritis both knees.

Keep smiling!
.
Brambledog is offline   Reply With QuoteReply With Quote
Old 01-21-2014, 09:19 AM #5
RSD ME RSD ME is offline
Senior Member
 
Join Date: Sep 2013
Posts: 1,500
10 yr Member
RSD ME RSD ME is offline
Senior Member
 
Join Date: Sep 2013
Posts: 1,500
10 yr Member
Default

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.
__________________
RSD ME
.
RSD ME is offline   Reply With QuoteReply With Quote
Old 01-21-2014, 11:44 PM #6
Allanira Allanira is offline
Member
 
Join Date: Feb 2013
Location: NM
Posts: 318
10 yr Member
Allanira Allanira is offline
Member
 
Join Date: Feb 2013
Location: NM
Posts: 318
10 yr Member
Default

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.
Allanira is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
Inspiretoday (02-23-2016)
Old 01-22-2014, 12:25 AM #7
finz finz is offline
Senior Member
 
Join Date: Feb 2007
Posts: 1,804
15 yr Member
finz finz is offline
Senior Member
 
Join Date: Feb 2007
Posts: 1,804
15 yr Member
Default

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.
__________________

.


Gee, this looks like a great place to sit and have a picnic with my yummy bone !
finz is offline   Reply With QuoteReply With Quote
Old 01-22-2014, 12:26 AM #8
finz finz is offline
Senior Member
 
Join Date: Feb 2007
Posts: 1,804
15 yr Member
finz finz is offline
Senior Member
 
Join Date: Feb 2007
Posts: 1,804
15 yr Member
Default

Quote:
Originally Posted by Brambledog View Post
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.

.


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

.


Gee, this looks like a great place to sit and have a picnic with my yummy bone !
finz is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
Allanira (01-22-2014), Brambledog (01-22-2014)
Old 02-18-2016, 11:10 PM #9
TardisMari TardisMari is offline
New Member
 
Join Date: Feb 2016
Posts: 1
8 yr Member
TardisMari TardisMari is offline
New Member
 
Join Date: Feb 2016
Posts: 1
8 yr Member
Wink 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!
TardisMari is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
catra121 (02-19-2016), IamJenn (02-20-2016), Inspiretoday (02-23-2016), knottywheelz (03-10-2016), Littlepaw (02-20-2016), PurpleFoot721 (02-19-2016)
Old 02-20-2016, 08:36 AM #10
IamJenn's Avatar
IamJenn IamJenn is offline
Junior Member
 
Join Date: Dec 2015
Location: Hawaii
Posts: 30
8 yr Member
IamJenn IamJenn is offline
Junior Member
IamJenn's Avatar
 
Join Date: Dec 2015
Location: Hawaii
Posts: 30
8 yr Member
Default 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! 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.
IamJenn is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
knottywheelz (03-10-2016), Littlepaw (02-20-2016), PurpleFoot721 (02-21-2016)
Reply

Tags
crps, pregnancy, rsd, rsd and crps, rsd/crps

Thread Tools
Display Modes

Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

BB code is On
Smilies are On
[IMG] code is On
HTML code is Off


Similar Threads
Thread Thread Starter Forum Replies Last Post
CRPS and Pregnancy GalenaFaolan Reflex Sympathetic Dystrophy (RSD and CRPS) 4 07-21-2013 12:23 AM
RSD and pregnancy Allanira Reflex Sympathetic Dystrophy (RSD and CRPS) 1 05-05-2013 10:31 AM
tos and pregnancy hippoinsamui Thoracic Outlet Syndrome 6 10-24-2011 12:15 AM
pregnancy lilmama8524 New Member Introductions 8 06-24-2010 09:56 PM
Pregnancy and RSD LisaM Reflex Sympathetic Dystrophy (RSD and CRPS) 18 10-09-2006 06:34 PM


All times are GMT -5. The time now is 05:58 PM.

Powered by vBulletin • Copyright ©2000 - 2024, Jelsoft Enterprises Ltd.

vBulletin Optimisation provided by vB Optimise v2.7.1 (Lite) - vBulletin Mods & Addons Copyright © 2024 DragonByte Technologies Ltd.
 

NeuroTalk Forums

Helping support those with neurological and related conditions.

 

The material on this site is for informational purposes only,
and is not a substitute for medical advice, diagnosis or treatment
provided by a qualified health care provider.


Always consult your doctor before trying anything you read here.