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Reflex Sympathetic Dystrophy (RSD) (CRPS) Message Board

A question from a rookie

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Old 09-17-2004, 12:25 PM   #1
Join Date: Sep 2004
Location: Michigan
Posts: 1
luckyfin23 HB User
A question from a rookie

Is it possible to start a family when one of the possible parents might have it??
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Old 09-17-2004, 06:46 PM   #2
Join Date: Jan 2004
Location: Coffeyville, KS
Posts: 275
msdrea83 HB User
Re: A question from a rookie

There should be no reason why you couldn't start a family. RSD isn't a contractable disease or anything that you can give the baby if that's what you're worried about. If the mother is the one having the baby she'll want to be careful with the meds she's on, to make sure they won't cause complications or something like that. but i see no reason for not being able to start a family. i'm only 21 and i'm still planning on having a baby or 2. i'm not letting this stop me from being a mother.

Old 09-17-2004, 07:46 PM   #3
Join Date: Jun 2003
Posts: 310
riceneuroni HB User
Re: A question from a rookie

My husband's cousin contracted this after she got pregnant. It's been many years now, but she raised the kids from a bed pretty much and now is completely bed ridden. I'm not trying to discourage you. My pain comes and goes while for some folks it goes and never returns. Be sure you do your homework on this and make sure you know exactly what the possible outcomes are and that your partner is as committed to the decision as you - whichever way that may be.

Old 09-18-2004, 12:21 AM   #4
Join Date: Aug 2004
Location: Melbourne, Australia
Posts: 94
KateInAustralia HB User
Re: A question from a rookie

I think I can answer this one too, as I had my third child two years after my RSD started. I have RSD in my right arm, from fingers to the side of my neck.

Basically, there were no problems for me as far as pregnancy goes. I did have to go off all medications. Occasionally I took a paracetamol, but that was it. I used heatpacks and I took things easy. But thankfully, my RSD went into a remission during the pregnancy. I think it was the hormones and seretonin levels etc. So I felt great while I was pregnant.

I have talked with a few people who've had babies since having rsd and all found that their pain levels dropped to an almost nonexistant level during the pregnancy, but increased after the birth and was harder to control.

I had to be very firm with nurses etc though. They couldn't take my blood pressure on my right arm, and with the blood test, it had to be in my left arm, so they had one shot to get it right as they couldn't try in my right arm!
That went for labour too, drips, injections and blood pressure all had to be done in the one arm. If the RSD parent has it in an arm, they must be so stubborn on this, as most midwives and antenatal dr's know very little about RSD and might not understand the significance.

As soon as I had my son, the pain came back. I think tensing during contractions added to this, and the release of all the pregnancy hormones. I had previously been on Tramal, with no side effects and good pain relief. So when my pain returned after having my son, I tried to go back on tramal, but had very adverse reactions to it. Somehow I had developed an allergy to it- itching, hallucinations, fainting spells, vomitting, all within the first 12 hours of taking it! So I had to look at other medications.

I couldn't breastfeed my son at all. As I can't have anything touch my right arm, there's no way I could hold him on that side. I always held him with my left arm. And bottlefeeding was actually a benefit, as I could go back on pain medications as soon as I needed them. I learnt to scoop him up once he weighed a bit more instead of picking him up with both hands, I didn't bath him, my husband did that, but I still did most other things, just with adjustments. My 2nd daughter was 7 months old when my RSD started, so some adjustments I was prepared for as I'd done it before.

So the RSD won't affect your baby in anyway. If the dad has RSD, there will be no problems, he'll just have to adjust to doing some things differently after the birth, same with any disability. If its the mum with RSD, you'll probably enjoy the pregnancy as your pain levels could go down (wish I could take pregnancy hormones as part of my pain relief!). But you need to think about the adjustments and changes that the rsd will bring when you have a newborn, like feeding, carrying, bathing etc, especially if you'll be home on your own for the majority of the day. And be very stubborn in the hospital on checkups etc, that your antenatal treatment in no way puts your rsd at risk ie. needles in your rsd limb.

My rsd got worse after the pregnancy, and I knew it might going into it, but it was worth the risk as I have a great 2 year old boy now, and I feel I very proud of myself for doing something that the RSD would've liked to have taken away from me. In some ways it was difficult, but I had good family support who could help with washing, and groceris and bathing etc, so that I didn't have to hold him and use my rsd arm for things that would cause pain.
It still is very difficult. I think the newborn part was the easiest, as he were so light and easy to look after one handed.

You do need to look at the big picture though- beyond baby stage. There are a lot of things I have had to let go, that other mums can do. I can't go in a normal swimming pool with my kids, I can't push them for long on the swings as I can only push with one arm, lifting them in and out of the carseat and stroller, driving, helping out at kindy, often my 6 year old daughter can't have friends round after school because its too much work for me if I'm in pain already, cutting and pasting, some days just doing my daughter's hair is hard. I can't muck around on the floor with them, shoelaces are impossible to undo (!!) sandwiches are awkward to make--- there are so many things as they grow up that I find as a challenge or can't do at all. It's not just about having the baby.

My kids are now 6, 4 and 2 years old. Everyday something comes up that I wish I could do with them, but can't. They miss out on "mum" things with me that other kids get, and that can be hard. They're understanding, they've never known any different, but I am always aware that I am likely to get a lot worse and am worried about how that will affect my kids and my ability to be a mum. I adore my kids and wouldn't swap them for the world, but it can be hard getting a balance and you need to be aware going into parenthood that it may not be as easy for you as it is for someone else. And for healthy people, having a baby is REALLY tough, so RSD comes on top of that!

And there'll be a lot of pressure on the husband/partner to carry out a lot of the household and parenting tasks, as some days all you can do is make sure you and your child are fed and looked after, and the housework etc is just not possible. My husband was working 6 days a week, then coming home and cooking dinner, feeding the baby, bathing the 3 kids, then doing groceries and housework when they were in bed. Until he became full time carer for us this year, it was very hard on him.

I suggest talking to your pm dr first, to make sure its safe to go off tablets, or to carry on taking them during your pregnancy. And consider all the pros and cons, what would change etc. If its what you both want to do, go for it!

I have to say though, that the RSD is NOW affecting my decision to have a 4th child. This is partly because now my husband is carer, our wage is less. But also because my rsd has progressed to a point where I would be crazy to go without medications for 9 months. I also have a lot of limitations on me now that I didn't have when I had my son and it wouldn't be fair on the 3 kids I was lucky enough to have if I made myself so much worse by having a 4th child. We are grateful to have had our son during my rsd and we're not going to push our luck any further!!

Unless the RSD is already very far gone, my opinion would be that it shouldn't be a reason NOT to have kids. We never know what life is going to throw at us, we just have to take it as it comes! But be aware of what might happen going in to it!

Sorry this is longwinded, its just something I've gone through and I wanted to let you know all aspects of this, from someone who's been there.

Good luck!

x Kate

Old 09-18-2004, 07:50 AM   #5
Junior Member
Join Date: Apr 2004
Posts: 43
Re: A question from a rookie

I admire you Kate, that is very well written ande VERY WELL DONE!

And we never know what will happen to us you are so right.
I have a three months old grandchild. When my daughter was pregnant none of us thought I would be able to hold him or do anything at all. I have RSD in both my arms/hands and stiff fingers, but yesterday I had him for two hours alone! I was proud and happy, because this means I am so much better!!!!!!!!!!!!!!!!!! My daughter said this opens a new door for her too, me babysitting

So all of you, do not stop using your RSD-limbs it may happen!

And back to the question, I have heard others say they are OK under pregnancy and this probably due to hormones.

Oh if I could be pregnant allways!

Wish you the best, children is a blessing!

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