NeuroTalk Support Groups - 9 weeks Pregnant Again!!

NeuroTalk Support Groups (https://www.neurotalk.org/)

- Reflex Sympathetic Dystrophy (RSD and CRPS) (https://www.neurotalk.org/reflex-sympathetic-dystrophy-rsd-and-crps-/)

- - 9 weeks Pregnant Again!! (https://www.neurotalk.org/reflex-sympathetic-dystrophy-rsd-and-crps-/78574-9-weeks-pregnant.html)

CONGRATULATIONS!!

I hope the pain stays away for the whole pregnancy and you can really enjoy it!

To SandyRI and others that asked- I just to clear something up, it's not a given that you get a remission during pregnancy. Some people do, some people don't. Yes, there is a hormone and autoimmune response, but not everyone gets it. I, for one, had a remission with one pregnancy but not with the next. My rsd actually spread during the second pregnancy because of an injury. A friend of mine also hoped for a remission but went through the whole pregnancy with MORE pain than she'd had before. :(

Shannon- I had a c/section with my second RSD pregnancy, but not with my first. I had a normal labour and delivery with my son. But even though I'd had the remission during his pregnancy, it came back within an hour of his birth. I thought maybe I'd tensed up too much during the contractions but I soon realised it was the full blown rsd back straight away. With my c/section with Hannah they had me on more pain meds so that helped in the first few days. But I've posted my stories on here a few times so won't go into all the details again, you can search for them or ask me if there's anything else you'd like to know.

I just wanted to advise those of you who are thinking of falling pregnant that you can't guarantee a remission, there's a chance it won't happen (or might only be there for a little while) so you have to be prepared for that. I went into my 2nd one so sure that my rsd wouldn't be a problem, so was devastated when it didn't go away. :(

But of course I wish you girls ALL THE BEST and that you do all get a wonderful remission of rsd symptoms while you're pregnant :) I'll keep everything crossed for you that it all goes smoothly!

x Kate

kate
like you i had the same thing kinda remission wasnt any where bad could tolerate second was a disaster had to have surgery while pregnant and that just made it worse was in bed alot but its true its a 50/50 thing and i hope heather does this time around too

CONGRATS TO YOU AND DADDY TO BE THIS IS AWESOME NEWS.....A baby is always such welcome news with all the pain we suffer...I hope you have a pain free pregnancy and a very healthly little one....:grouphug:

Thanks so much! They are my reason to keep going too. I couldn't imagine dealing with RSD without them. I would probably be in bed all the time and be giving up. They keep me on my toes!

Love,
H

Quote:

Originally Posted by MominPainRSD (Post 469823)

Congratulations to you and your family!!! I am so elated for you.....a new baby
AND pain free for a season (and hopefully longer this time)!! Best wishes to you for a healthy, happy pregnancy and birth!!

Please keep us all posted on how things go for you! It is SO enlightening to hear of someone else's joy when there is such pain to deal with in our own lives. My four children are MY reason to keep going!!

Shannon and CAKE

Thanks so much! I am glad that you are trying for your second. I pray that you get pregnant and that you have some kind of remission.

I had a c-section first because my PM didn't want me to have an episiotomy...If I tore in my vaginal area, I could have RSD spread there. I would rather have it where the c-section is than in my girly area. I have flared a few times down there and it's the WORST!!! So, now after you have one c-section all the future have to be too.

Also, I am on SSDI. Medicare takes care of 80% and I have Medical as a secondary that will take care of the remaining 20%.

PM as much as you want. I am always here to answer your questions!

KATE - I am so glad you were here when I got pregnant first. You taught me most of this! You got me through it and I will never forget you! Thanks so much!

Heather:grouphug:

Quote:

Originally Posted by kahmasayshi3 (Post 469866)

Heather, Much congrats to you!

I have read your previous posts and I have to say you gave me much courage to try for another baby. I have 1 child, a son, who is 3-years-old, that I had pre-Rsd. I developed Rsd in my lower left leg and foot about a year ago and it has spread to my upper left arm. Because of the progression and worry that I will only get worse, my hubby and I have decided to try for our second child now, with the blessings of my Ob/Gyn and pain mgmt dr. We are trying, so Im not sure if we are prego yet, but I will let you know! I was reading your posts because u said you used the pain patches during pregnancy and that was what I was going to switch too, however, I am on a lower dose of methadone and both the ob and pain mgmt dr have had good experiences with this drug during pregnancy, so no switching here. I have titrated off all the other drugs but methadone 10mg 3 times a day and norco for breakthrough. Also, I have a spinal cord stim for my lower leg and apparently there is research that I can still use it during pregnancy.
I hate that I have to consider using meds but Ive read the trials and I have consulted with 2 different obs and my pain mgmt dr and they had no worries. Much congrats, did both of you have c-sections? I read on the Rsddsa site that we should have c-sections to prevent spreading to the female organs, but it sounds like it is pretty unavoidable, but well worth it to complete our families.
Is anyone else on social security disability? If so, were you able to use medicare for pregnancy?

Much luck Heather!
Hugs,
Shannon

I'm glad my experiences helped you, Heather! When I was pregnant with Dayne in 2001 there was hardly any info on the net about RSD and pregnancy- only a section on Dr Hooshmand's puzzle pages about GETTING rsd when you're pregnant.

I'm totally with you on the "Kids keeping you moving" thing. Every morning I get up and make my three school kids' lunches and breakfasts. I could let my husband do it, but I think it's important I do, otherwise I'd never get out of bed in the mornings.

Sometimes it's hard being a parent with this monster on your back- especially when they need you to do something- but I totally agree that if it wasn't for them I wouldn't get out of bed, I wouldn't have the drive to keep exercising and moving.

As hard as it is to say though, I don't think we would have had #4 if we knew the rsd was going to spread to my leg. I could handle it in one arm- I could still walk around, pick the kids up one handed, do everything for them one handed, but once I progressed to needing crutches it go SO DIfficult. When Hannah was little I couldn't walk without both crutches at all, so I'd have to put her in the stroller to move her from one room in the house to another. I couldn't carry her and walk. I couldn't get her out of the cot and put her in her bouncer. I definitely couldn't bath her. And getting her in and out of the car was near impossible, when I couldn't even walk to the car in the driveway. Of course she's worth all of that and I wouldn't change a thing, but it was very different having a newborn with just one of my arms and hands out of action, compared to having a newborn and no use of my right side at all.

But once you get past that and they get a bit bigger, it's surprising how quickly and easily the kids accept how you are. When my RSD first started, Bailey was 2 years old and Olivia was 7 months old, so they've all only ever known me like this (Except for the "remissions" I had thanks to the ketamine infusions), even though I had them pre-rsd and Dayne and Hannah afterwards.

Hannah's 2.5 years old (she'll be three in June, god that's gone quickly! :eek: ) and now if she tries to pull me off the lounge and I say I'm too sore, she just accepts that and works around it, whereas before she'd just keep yanking on my arm. She knows I have a "sore leg" and she's fine with that.

She was so gorgeous the other day yet it also broke my heart- I took her to the Drs and when I sat down in the waiting room, she got one of the small plastic chairs (kids size) and put it in front of me, to rest my sore foot up on! :o It sucks that she's so aware of it, but it was also such a sweet thing for her to do.

One big motivation I have right now is because of Hannah. She's at the age now that she doesn't want to be in the stroller, she wants to walk on her own. But I rely on the stroller to be like a walking frame for me, I can't walk far without either my crutches or the stroller/a shopping trolley to lean on. So the thought of her being totally stroller-free in a few months is very scary for me, and that motivates me to work even harder at perfecting this walking business ;)

Having kids and RSD can be a very frustrating thing (I'm constantly cranky at myself about how my RSD Affects their lives) but it's also such a blessing. It's like sticking your finger up at your rsd and saying it doesn't get to control everything like it wants to! :p You feel such a victory in yourself and every time you look at your child you feel that you can do anything, your rsd can't stop you. There's nothing like it!

I wish all of you who are pregnant or hoping to fall pregnant the BEST of luck with it! xx

Congratulations Heather!!
I hope things go very well for you hon.
I now have a new grand-daughter who just scared herself with her first giggle today, Ava-Lynne.. And she has given me a new lease on life.. such a precious angel.
They now live with me and I find I have been much more active since her birth and I have no doubt that the future will see me even more hands on..
It is worth the pain in my arms to see that cute little quirk smile she makes when we play pat a cake, and if I am careful it is good physio.

Big hugs Heather.:hug:

Congratulations on your pregnancy

I am new to the site, but unfortunately not new to RSD. I have had RSD in my left leg and foot since 2004. I had a remission off all meds from 2005-2006 but was in a fender bender which aggrivated the RSD, to where I am back on perc and oxy. I have a beautiful son 21 months old (post rsd), my doctors were hoping for the pregnancy remission, but that didn't happen. Fortunately we didn't have to change my meds when I was pregnant. The Neurontins of the world have never done anything. The narcotics are the only thing that takes a litle of the edge off, and allows for me to get out of bed and behave somewhat normally.

Also, had a C-Section, but more for the Drs fear of me further aggrivating the rsd or spreading it, becausing of the pushing..

My docs keep telling me I should go for the next one soon, since they don't know how long I will be stable, but my finances are a wreck since RSD came back...don't know what to do. I def want at least 1 more.

Since my remergence of the RSD, I have had to stop teaching and now do real estate since I can work from home and make my own hours. I hesitate to apply for disability in the hopes that some day I will once again be able to return to teaching...any thoughts in claims SSDI??

Docs pushing for me to get Spinal stimualtor...any thoughts. I am not sold on it though.

It all just sucks! But I try to count my blessings with my husband and son...

Congrats to all...and thanks for listening to me vent!!!

Hi Heather!
Two orders of congratulations! :)

First, on being blessed with your pregnancy and the wonderul miracle of life!!.

..and second, on being victorious in living your life on your terms, despite the RSD !!!

Many best wishes to you and your family!!
Hope4thebest:hug: