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 11-23-2014, 07:21 AM #81
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I hope you didn't have to deal with the doctor you didn't like AND that they took extra precautions for you during your C section.

I know you're incredibly strong, but you have someone else dependent on you now, so insist on the care you need going forward, for her sake if not yours!
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Old 11-23-2014, 09:35 AM #82
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I hope you didn't have to deal with the doctor you didn't like AND that they took extra precautions for you during your C section.

I know you're incredibly strong, but you have someone else dependent on you now, so insist on the care you need going forward, for her sake if not yours!
I dealt with every doctor at the practice during my hospital stay EXCEPT that doctor...I was very grateful for that one small blessing. The extra stress of dealing with HER on top of everything else might have done me in...lol!

When I feel up to it...I'll go over the details of what happened with the delivery, C-section, etc. I really want to make sure I go through it all in detail in case is helps anyone else. Finding information about pregnancy and RSD was very difficult and I want to do my share as much as possible to help others have some idea of what to expect. I know that's hard because like everything else we are all different...but I'm hoping it will help some people even if it's just to give them SOME idea of what to expect.
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Old 11-23-2014, 10:38 AM #83
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Thank goodness you avoided that dreaded doctor.

I'm so happy that you delivered a healthy baby. I had a very early miscarriage several years ago, which seems to happen too frequently with us, so I've been worried for you. The fact that you've stayed so active likely made the difference!

Enjoy her, and ask for help when you need it--I know you have a great support system with your bf, but it can be overwhelming to care for a newborn. I'd highly recommend getting some cleaning help or at the very least invest in a Roomba if you have carpets to lessen your household chores if you don't already have one.
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Old 11-24-2014, 04:48 PM #84
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Congratulations Catra! So happy to hear baby is doing well. Hope you are on the mend as well.

Take care.
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Old 11-24-2014, 05:14 PM #85
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Just wanted to give a little update on the pregnancy (in a thread with a less negative title than "Terrible Day") and how it is/isn't affecting my RSD.

Unfortunately...I haven't experienced a full remission or anything like it. I knew there was an outside shot of remission in pregnancy but I wasn't counting on it. If I am honest though...I'm sort of grateful that I haven't experienced a full remission. It took a long time for me to learn all the coping techniques and to learn to just get used to this level of pain. If it suddenly went away and then came back full forced after the pregnancy was over...I don't know if I could cope with that. I mean...I know I COULD...I just don't know how long it would take for me to regain the function and everything afterwards and I will NEED to be functional to take care of the baby. So I am looking at this as a positive thing.

I do have to admit though that on a day to day, moment to moment basis...I feel better than I have in a long time. I still get flare ups and the pain is always worse at the end of the day...but I just don't feel as bad as normal. Maybe it's the pregnancy hormones helping me out...or it could just be that I am so frigging happy and am distracted from the pain because I am always thinking about the baby...or a combination of both. But this is genuinely the best I have felt in years.

As for the pregnancy itself...it is going very well and very smoothly right now. At my 12 week ultrasound the baby was very active and moving around a lot. So far every test for problems has come back negative...and the baby is measuring exactly the size they are supposed to be. Me on the other hand...I'm HUGE already at 14 weeks. People seriously think I'm 5-6 months along because my belly has gotten so big already...but I'm happy about the big belly and proud of it. Makes everything feel so real and makes me even more excited. Sitting on the couch, rubbing my belly...best coping mechanism for the pain I've encountered yet because it just makes me so happy.

I will try to post updates about everything and any affects the pregnancy has on my RSD...mostly because I get so very frustrated at the very small amount of information out there about what it's like to be pregnant and have RSD. I know it will be different for everyone...and each pregnancy is different too...but SOME information is better than none, right?

Hope everyone is doing well.
I am so happy for you. I have PCOS so I was never able to have any. I am now 51 in menopause. Truly enjoy your pregnancy! LISAR624
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Old 11-24-2014, 05:25 PM #86
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Had a really bad flare up yesterday...the worst one I have had in months. I was on the way to work and all of a sudden my hip started burning, then it went down into my thigh, then knee, etc until it ended at my ankle. The pain spread to my left hip back in December and this has definitely been the worst flare up I've had there yet. I think it was the vibrations in the car that did it...I also hit a couple of rough patches in the road. Because of my already large belly...the seat belt sits differently and right on that area. I was a mess and only lasted 4 hours at work before I had to leave...and I was not very productive those four hours. I spent several hours sitting on the floor in my office with the space heater aimed directly at my hip...which helped just enough that I could consider driving home...which I did. I hate when I have to leave work early or call off because of the pain...but this was a REALLY bad flare up...I cried the whole drive home.

Feeling a little better this morning but it will be a rough night at work. Hopefully the drive into work doesn't kill me...
FLARE-UPS are the worst! I am dealing with it right now. My whole body feels like ice running through my nerves!!!! I have not been out of bed and the holidays are here. LISAR624
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Old 11-25-2014, 09:34 AM #87
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Congratulations on your baby girl!!

So glad you didn't have to deal with the horrible doctor!
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Old 01-18-2015, 10:00 AM #88
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Okay...so it's been a while since my last update. I wanted to wait until after my 6 week follow up appointment and to see what was happening with the pain in my abdomen...if it was normal pain from a C-section or if it was RSD spread. Long story short...the answer to that question is that it is RSD spread...yay me...

I don't know that I ever explained exactly what happened when I went into labor...as it was sort of strange. I will go into some detail...so if you don't want to hear specifics about the birth itself then I recommend not reading and skipping ahead to the last paragraph just summing things up.

I had gone to the doctor the Friday before I had the baby for a growth ultrasound to check on the size of the baby and a non-stress test to see if I was having contractions. I WAS having contractions...some big ones according to the nurse...but I didn't feel anything.

So Saturday rolls around and I lost my mucus plug while I was at work. I know even when you lose that it can still be weeks until you go into labor so I wasn't too worried...but since the doctor had said on Friday that I was 1cm dilated and 50% effaced I made a mental note of it. This is something I wished they talked about more in the classes I went to because it caused some confusion for me.

So Sunday I was off work and I lost a little more of the mucus plug in the morning. Again...I had read online that this can happen a little at a time so I didn't think anything of it. I was tired...but no more than usual. My boyfriend and I went to his family's house to celebrate Thanksgiving early because some of my boyfriend's brothers were spending the holiday with other family or out of town. I was feeling uncomfortable but no more than I had lately since the baby dropped a couple of weeks earlier. I noticed when I went to the bathroom that things were still mucus like down there but since I had lost the mucus plug I thought it was just some more of that.

Monday morning rolls around and I'm supposed to go into work but I just don't quite feel right...nothing specific but I feel like I should call the doctor as I am still having some mucus like drainage and I think there's a possibility that my water has broken and it's a small leak. They sound skeptical on the phone when I call and explain what is going on but they tell me to come in an hour later. I call my boss at work and tell him I'm going to the doctor but will be in afterwards if it's nothing.

So I tell the doctor when I see her that I think my water may have broken and it's a small leak...but I'm not sure. She sort of looks at me like I'm stupid...but what the heck do I know...it's my first baby for goodness sakes. She checks it out and says she doesn't think the water has broken as she can still see and feel the water sack. She does a test of the mucus and it comes back negative for the water breaking. Okay I think...this is not THE day and I text my boyfriend telling him he can go to work.

THEN she says, "Let's do an ultrasound though to check your fluid levels." Okay...I always like to see the baby on the ultrasounds so I was cool with that. Yeah...my fluid levels were VERY low...dangerously low...and the doctor told me to go home, eat, then go to the hospital because they were going to do another test that's more sensitive to see if the water had broken but even if it didn't...they were going to need to induce me because I was having the baby TODAY. Yikes...how did this go from your bag of water is fine and not broken to you're having this baby today?

So I go to the hospital after I eat lunch and they get me hooked up to all the monitors. I have my childbirth plan with me and tell them I want an epidural as soon as possible and explain my RSD. They like my birth plan and say it's very helpful to have everything on there about my RSD. They have me hooked up to all the monitors and I'm having some pretty major contractions and they're pretty close together...but I can't feel them at all.

I get my epidural and by this time I am feeling some very slight pressure...but compared to RSD...it's not bad at all. I also spoke to the anesthesiologist about keeping the epidural in after the birth to give me additional pain relief to hopefully reduce the risk of spread and he agreed that was a good idea. A couple of hours later...despite the epidural...the pain is getting more intense...but still nothing I can't handle easily. Mostly it's just exhausting. They induced me somewhere along the way...and that test to see if my water had broken came back positive at the hospital...I guess the one they use is much more sensitive than the one at the doctor's office.

The doctor was a little condescending to me about not coming in Sunday when I noticed the mucus like drainage but I seriously wanted to punch her in the face for that because when I first got there she was all, nothing abnormal here everything looks fine but let's just do the ultrasound in case. If they had done the ultrasound the day before...would the fluid levels have been low enough to want to send me to the hospital? I think not...but whatever...

Anyway...after about 6 hours at the hospital I started to run a fever and the baby's heart rate started to get too high. The doctor said I had not progressed far enough along for a vaginal birth so we needed to do a C-section...NOW. Seriously...from the time the doctor said this to the time I was in the OR was like 15 minutes...and it was only that long because they gave me some nasty thing to drink and I proceeded to projectile vomit for several minutes...which took a little while to clean up.

They get me to the OR and it is FREEZING in there. Holy crap...I was in so much pain from the cold and I was shaking so bad that they were afraid the meds wouldn't work. They put this vacuum like eat thing over my chest and that helped get me warmer...but the pain was still pretty bad. I didn't expect it to be so cold in there. Then they give you some stuff to numb the lower half of you...not sure what it was. They kept poking me with a pin or needle in the belly and asking if I could feel it. Yes...for a very long time the answer was yes and they seemed to be getting very concerned but kept upping the meds until FINALLY I couldn't feel anything. I was also getting very loopy and things got pretty hazy after this. I remember my boyfriend holding my hand and I remember when they laid the baby down next to my head so I could see her and meet her...and then I remember being in the recovery room.

This recovery room was a little scary. I was by myself for a while with just the nurse because my boyfriend was with the baby in the special care nursery until they got all the IVs in and everything and he was sure she was fine. This was several hours after delivery. The nurse was very concerned because I was bleeding more than was usual so they kept me there for a little longer than normal before moving me back to my room.

The pain at this point was pretty bad...even with the epidural AND an addition pain pump they put directly into my abdomen. They come in regularly to do this "uterine massage" thing...oh my god is that agony. They left the epidural in until the next morning and I wasn't able to hold my baby and visit her in the special care nursery until it was taken out...something I didn't really think about before so thought it worth mentioning. They left the other pain pump that was running straight into my abdomen in for a few more days. The doctor said they usually do one or the other (epidural or pump...but did both for me because they thought it might help with the RSD).

Now here's where things get a little crazy. The baby needed to be on 48 hours of antibiotics because of the fever I was running and the C-section. Then, if everything went fine, she would get to come into the room with me after that was done...but she needed to stay in the special care nursery until the antibiotics were done. Wednesday rolls around and my boyfriend and I go to visit her at 9am and her monitors start alarming because her oxygen saturation levels are dropping. The doctor comes over to take care of it (she looks fine and her heart rate and everything else were fine) and then tells us this is the second episode in the last 2 hours and he feels they need to send her over to another hospital for a higher level of care.

So she gets sent over to another hospital in an ambulance and I have to stay at this hospital because the doctors think I need a blood transfusion because my counts are all too low. My boyfriend spent the next few days going to see the baby at that hospital during the day, taking pictures of her for me, talking to the doctors while they ran tests...and then coming back to stay with me at night and in the morning. I did end up getting a blood transfusion on Thursday but that helped my counts go up and they released me on Friday. We went home quickly and then went over to the hospital to visit our daughter. She was there another week in the NICU and we didn't get to take her home until she was 11 days old.

I mention all of that because I think it probably has something to do with the fact that my RSD spread. Having a baby in the NICU, transferred to a different hospital than you so you can't see her for days, them running a ton of tests and talking about all sorts of possibilities like viruses, seizures, strokes, etc and not finding anything, spending a week visiting her, trying to pump breast milk every 2 hours while at home and getting little sleep, the long car ride to the hospital every day...this was all VERY stressful. And we know what stress can do when you have RSD. So...yeah...it was a rough period. Thankfully...they didn't ever find anything wrong with her and said that means it's probably something she would grow out of in a week to a month and she would be perfectly fine. We have a follow up with neurology this coming Tuesday...but she's been great since coming home so I am not worried.

So...lots of stress going on following the birth...and I'm still in lots of pain. They gave me Norco and Advil...but it wasn't doing anything for the pain at all. I followed up with the doctor 2 weeks later and she said I could take baths again. THANK GOD! That was something I didn't realize...you can't take baths after you give birth and that is one of my primary ways of keeping my RSD under control. At this point...the doctor isn't concerned that I still have pain. The pain isn't at the incision site (which was healing up well)...but it was above that and inside. She said that's where they tunnel up and then slice through all the nerves...so it's not uncommon to have pain there.

Fast forward to my 6 week appointment...the news is not so good. Everything has healed up well...the incision and everything inside looks normal too...but my pain is still really severe. The doctor says at this point the pain from the C-section should be gone. Some people may experience some minor discomfort at this point...but the pain should basically be gone. She thinks it's the RSD. I thought so too since the pain meds didn't help and it FEELS like RSD pain with the burning and sensitivity and such. Problem is...it's internal so many of the things I do to treat my RSD just don't quite cut it. They help a little (heat, warm baths, etc) but far less than normal.

The other problem is that I am breastfeeding so my options for medications are basically zero. I could keep taking the Norco but they're not helping so I don't feel like there's any point with that. So the doctor has me off work until Feb 15th and I'm using this time to learn to cope with the pain as much as possible. Not an easy task when you have a newborn to take care of who keeps getting bigger and bigger...but we're figuring things out. I am optimistic about returning to work in February and being okay. I was afraid that the RSD would spread to my abdomen. I wanted to avoid the C-section because of this fear (I had spread after a lumbar sympathetic block...I didn't think my chances were good at avoiding spread after something much more invasive like a C-section). Then add to all of that the stress in the weeks following the delivery and my inability to do some of the things that would have helped (like the baths)...well...it seems like things were stacked against me.

In summary...here's what I would say about my experience with RSD and pregnancy. The pregnancy itself was great. I did not experience remission but things didn't get worse either. Actually...I was so happy and so distracted by the pregnancy that I feel like even though I didn't go into remission with the pregnancy that I was able to cope with it better. I was a very happy pregnant woman and even the slight discomforts were moments I treasured...just loved the entire experience of being pregnant. The BIRTH however was a killer for me. Nothing went the way I wanted it to and in the end my RSD spread to my abdomen. Only time will tell how that goes...if it ever gets better with time...but for now I will say that it totally sucks and there are times I feel like a bad mom because with how bad the pain is I can't carry my little girl for long periods of time and need to set her down in her swing. I still read to her when she's in there, I use a carrier if I know I need to carry her for a while, we interact a lot...but I wish I could always hold her when she wants to be held and sometimes I just can't. That sucks. Would I do it all again? Absolutely...but hopefully not any time too soon because I think two babies in diapers and all that WOULD kill me.
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Old 01-18-2015, 01:00 PM #89
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congratulations on your new little bundle of joy Catra! i'm so happy for you! enjoy your new baby!
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Old 01-20-2015, 04:50 PM #90
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Wow that is quite a story!! I'm so glad she is healthy. It sucks that thing's didn't go as planned for the delivery.

I'm sorry that it seems the c-section has caused a spread though Even "healthy" friends and family I have known who had c-section's were in horrible pain following them...I can't imagine a RSD spread on top of the pain such a major surgery can cause. It's crazy that people actually want them versus a vaginal delivery.

I wonder if a more nerve type medication (Cymbalta, Lyrics, Tegretol, neurotin, etc) would help with the pain versus the pain medication.
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