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 02-23-2016, 08:06 PM #11
Inspiretoday Inspiretoday is offline
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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I've sadly grown envious of the other pregnant women at work and I've withdrawn from helping out with the parenting of my boyfriend's kids.It may be just a phase in the grieving process but it is just a reminder of a joy of life that I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.
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Old 02-23-2016, 08:57 PM #12
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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.
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Old 03-10-2016, 03:24 AM #13
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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.
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Old 01-21-2019, 06:58 PM #14
Deebaforlove Deebaforlove is offline
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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
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Old 01-29-2019, 09:28 AM #15
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Quote:
Originally Posted by Deebaforlove View Post
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

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.

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.
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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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