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 07-15-2014, 09:56 PM #31
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The specialist would be a perinatologist (no idea how to spell that)...basically a high risk pregnancy specialist. Not that I'm high risk...but they also see people who have unique situations/needs due to other health conditions. The specialist, at the very least, would work closely with a pain management doctor to determine the best way to handle the delivery, meds, etc. I think even just having a doctor who is used to partnering with other physicians and determining the needs of the patient is a good thing. It will be about 8 weeks until I see the specialist...my appointment in 4 weeks is to do the glucose test and then we will schedule the appointment with the specialist.
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Old 07-16-2014, 07:00 AM #32
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What great news on a healthy baby girl!!

I too appreciate you sharing this with us. It is so exciting to hear good news. Sorry the doctor was ignorant to RSD and didn't seem to want to learn. I really am shocked sometimes by the number of people in the medical community who have no idea what RSD even is!
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Old 07-16-2014, 04:31 PM #33
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Originally Posted by catra121 View Post
The specialist would be a perinatologist (no idea how to spell that)...basically a high risk pregnancy specialist. Not that I'm high risk...but they also see people who have unique situations/needs due to other health conditions. The specialist, at the very least, would work closely with a pain management doctor to determine the best way to handle the delivery, meds, etc. I think even just having a doctor who is used to partnering with other physicians and determining the needs of the patient is a good thing. It will be about 8 weeks until I see the specialist...my appointment in 4 weeks is to do the glucose test and then we will schedule the appointment with the specialist.
CATRA: sounds like a good plan, the perinatologist will be a good person to have on your team. Keep us posted and give that little girl a pat on your tummy from me!
__________________
1999 Chronic spine pain related to Degenerative Disc
Disease,
Sept 2001. C6 / C7 discectomy & fusion.
Jan. 2005 L5/S1 discectomy and Artificial Disc Replacement.
July 2011 removal of broken
.
Artificial Disc Replacement.
Woke up in recovery room with RSD Monster.:
.

Aug 2011 Stabilization of spine at L3/L4/L5.
October 2014 Rheumatoid Arthritis.
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Old 07-16-2014, 05:37 PM #34
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Congratulations on your baby girl!! How exited and I'm sure you will be ok. And specialist is also a great support for us and also make us be sure we are ok and taking a good care from every dr who had treat us and will treat us as well.
I'm so glad that everything is working the way is supposed to and also hope everything keeps that way, I know inside is always scary but nothing can be compare with the joy of knowing you are giving and caring a new life with you,that takes everything else less priority and the baby the first and only.
Rsd is so complex many times but making sure you are well take care will take some of the stress of your shoulders.
Blessings to both of you and gentle hugs,with love Jesika
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Old 07-31-2014, 08:02 AM #35
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It's been a couple of weeks since my last update and since I have the morning to myself before I have to go to work I thought I would post another one.

This week has not been the best. Last Friday I had a bad flare up in my left arm...sort of came out of no where. Felt a little better Saturday morning but then I had to carry groceries in and I aggravated it. Sunday morning again it was feeling a little better but we went to my niece and nephew's birthday party. It was about 85 degrees outside in the sun but I wore jeans and a t-shirt because I don't really trust being outside with my legs exposed to wind and the elements. Around 4pm...the weather changed very suddenly and it got windy, cloudy, and the temps dropped down into the 60s. My jacket was in the car so I was exposed to that crazy weather and my arm flared up REAL bad after that. Sunday night was miserable for me and I had to be up at 4:30am on Monday for work. So I got up Monday morning and within 15 minutes of being up I fell 3 times...twice into furniture and once all the way to the floor. My balance is really bad, especially during flare ups, and I'm blaming the sudden change in weather for this one. My whole left side has been in a flare up since then (I didn't go into work on Monday but was back Tuesday and Wednesday). My balance has returned now to some semblance of "normal" and I am moving much better...but the pain is still awful.

Good news is that baby is fine and doing well. I managed to turn while I was falling so I landed on my butt/back instead of my front. Other than being a very active kicker this week...I haven't noticed any changes or bad effects from the fall. I'm assuming she's kicking more because I am resting more (I've read that the baby is lulled to sleep when you move around and is awake when you are still). Healthy baby is really all I care about...and her kicks have a calming affect on me.

I am feeling some of the normal aches and pains of pregnancy (which compared to the flare up I'm having right now are a piece of cake to deal with...more of an annoyance than anything).

My back has been bothering me at night when I try to sleep. During the day I wear a support belt and have ZERO back pain (best $15 I ever spent in my life)...but at night I've been tossing and turning because I can't seem to get comfortable with my back aches.

My feet hurt...who would have thought carrying an extra 12 pounds would make your feet hurt more? But I finally broke down and ordered some shoes that I have been eyeing online for about 2 years now. They're more expensive than what I like to spend but the bottom line is that all the shoes I have are at the end of their lifespan anyway (worn out, no padding left, etc). So I decided to just go for it. Ordered them Friday I think it was and they arrived Tuesday. Reviews on them were mixed between people who LOVED them and walked all over Europe in them comfortably and people who hated them for their lack of arch support, etc. Well...I know I've only worn then for a day but holy crow...they are AWESOME so far. VERY light, breathable, flexible, and very comfortable. Maybe it's just because I am comparing them to shoes that my boyfriend paid $7 for at Kmart that I have worn until they are practically disintegrated...lol...but these are totally amazing. I can't believe how lightweight they are and how comfy they are even the first day wearing them at work (where I am on my feet for a good portion of the day...though slightly less yesterday since I'm still dealing with the pain flare up). These haven't needed any breaking in to be comfortable so far and that is amazing to me. I guess you do sometimes get what you pay for. Anyway...the point being that my feet have hurt less since I got these and I hope that trend continues. The pain isn't RSD pain...it's more like my feet ACHE because of the pregnancy...but it's still a rather annoying thing to deal with because I felt like I was constantly kicking my shoes off, putting different ones on, etc just to get some relief. These new shoes...I am keeping my fingers crossed that they continue to feel this way the longer I have them. I'm going to Disney World in just over a month and to have comfy shoes would be amazing for the trip.

Besides those couple of things and the flare ups...I feel really amazing being pregnant and so very happy. Being happy really does make the other stuff easier to deal with. Monday was big old slap in the face from my RSD...but it only kept me down for a day. Tuesday was rough but just being able to go into work felt really good (it always feels like I'm winning the battle with the RSD when I am able to work and do stuff...even if it hurts).

Hope everyone is doing well!!
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Old 07-31-2014, 09:00 PM #36
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So happy you both are doing ok and flare get in control .
Yes shoes many times makes a difference ,I bought a pair for $120.00 and was the best inversion ever ,problem was I only needed on to even up my ankle brace and surgical shoe but was real comfortable .
Many time the price don't matter when you get relief and hope that happy little girl brings you so many blessings ,my thoughts and prayers are always with you and your family,we are also here when you need us.
Thanks for making us part of your precious moments ,I'm sure we all appreciate it,gentle hugs ,with love Jesika .
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Old 07-31-2014, 09:40 PM #37
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Thanks for letting us know how you are doing, and letting us share in your joy.

Yup! I stopped buying cheap shoes years ago. Good shoes are an investment in your health and well being. And styles have gotten better over the years, not that I'm a fashionable gal but a cute shoe is always a nice treat!

Disney World is one of my favorite places to go! Have a wonderful ttrip.

Stay well, Catra!

~Lottie
__________________
1999 Chronic spine pain related to Degenerative Disc
Disease,
Sept 2001. C6 / C7 discectomy & fusion.
Jan. 2005 L5/S1 discectomy and Artificial Disc Replacement.
July 2011 removal of broken
.
Artificial Disc Replacement.
Woke up in recovery room with RSD Monster.:
.

Aug 2011 Stabilization of spine at L3/L4/L5.
October 2014 Rheumatoid Arthritis.
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Old 08-01-2014, 12:48 PM #38
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Quote:
Originally Posted by Lottie View Post
Thanks for letting us know how you are doing, and letting us share in your joy.

Yup! I stopped buying cheap shoes years ago. Good shoes are an investment in your health and well being. And styles have gotten better over the years, not that I'm a fashionable gal but a cute shoe is always a nice treat!

Disney World is one of my favorite places to go! Have a wonderful ttrip.

Stay well, Catra!

~Lottie
Disney World is also one of my favorite places. My promise to myself when I was doing physical therapy and stuck in a wheel chair was that when I got better...I was going to have a year of Disney. I went to Disney World 3 times in 12 months and Disneyland once in that year as well. It's my happy place. I love how accommodating they are to people with disabilities...it means I don't have to give up on going to my happy place.

While I am there this September...I'm having my maternity photos taken at Epcot. I'm SO excited...it's a little expensive but this is the only time I will be pregnant for the first time and I want to celebrate it and have some amazing photos to look back at.
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Old 08-01-2014, 11:19 PM #39
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What a beautiful idea! Does Epcot offer a maternity photo special, or you just like Epcot?
Yes, Disney is the industry leader in customer service and they provide gold standard accomodations to the mobility impaired. My last visit (Dec 2012) went very smoothly. Can't wait to go again. Tell Mickey and Minnie I say "hi"!!!!
~Lottie
__________________
1999 Chronic spine pain related to Degenerative Disc
Disease,
Sept 2001. C6 / C7 discectomy & fusion.
Jan. 2005 L5/S1 discectomy and Artificial Disc Replacement.
July 2011 removal of broken
.
Artificial Disc Replacement.
Woke up in recovery room with RSD Monster.:
.

Aug 2011 Stabilization of spine at L3/L4/L5.
October 2014 Rheumatoid Arthritis.
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Old 08-04-2014, 08:04 PM #40
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Quote:
Originally Posted by catra121 View Post
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.
Hi, Catra,

I haven't been on the site for a long time so I did not know about your
expecting a baby. I am so happy for you. God bless you and keep you
safe and happy.
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