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 02-22-2013, 08:55 AM #1
lorigood243 lorigood243 is offline
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Join Date: Jul 2010
Location: Northern Virginia
Posts: 224
10 yr Member
lorigood243 lorigood243 is offline
Member
 
Join Date: Jul 2010
Location: Northern Virginia
Posts: 224
10 yr Member
Default Internal RSd

Dear friend

I am so sorry that you are going through all of this. My RSd came because of gallbladder surgery and then before we knew what was wrong with a plastic surgeon who said lets cut off this swollen tissue and see if you get better....I got So worse. I went code blue after the surgery when i was in recovery and they brought me back. I had many problems after the surgery like high blood pressure, diabetes, sleep apnea and more.
the swelling has grown to over 80lbs on my abdomen and it wont come off no way no how. Now the RSD has spread to my feet and lower legs.

So my best reccomendation to you is stop fighting it. Surrender and lean on the Lord HE has big shoulders and will carry you through. Get a great pain management doctor who understands that you need a lot of different pain meds to battle this pain. Some days are better than others.
I have a wonderfully supportive family and found a great job that lets ,e work from home. Finally everything has lined up perfectly . I am mostly bed bound now and only go out once a week or to doctors appointments. My life is not how I dreamed at age 50.

Dont be so hard on yourself. Surround yourself with understanding friends and family and if they dont understand get them out of your life. My hubby is amazing and I know I am blessed with my situation. He takes care of me 24/7 providing all meals and companionship.

I hope that you will be gentle with yourself and hang in there. You can have peace where you are with God and enough pain meds and support.
Blessings
Lori
I dont come here very often for personal reasons.





Quote:
Originally Posted by irish4luck View Post
I have been a member since Oct. 2011 but I have never replied. I have had RSD for over 3 years from an auto accident in August 2009. The other driver was uninsured and totally at fault. My symptoms are localized on my upper right side. 2 months ago I had severe pain near my stomach and chest and ended up in the hospital for a few days. Cardiac and GI issues were ruled out. The diagnosis was that my RSD has now spread to my mid-section and I was off work until a week ago, when I went back for 4 hours per day. I have had 2 spinal injections in the last 4 weeks and I am scheduled for another within the next week. Unfortunately, over the last few days my stomach symptoms have worsened and I began vomiting after work today. I am really disappointed and scared that my RSD will continue to spread. Has anyone else's RSD symptoms progressed in this way? I would greatly appreciate any information, and yes, some moral support.
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"Thanks for this!" says:
birchlake (02-22-2013), irish4luck (02-22-2013)
Old 02-23-2013, 09:47 AM #2
irish4luck irish4luck is offline
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Join Date: Oct 2011
Location: Green Bay, Wisconsin
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irish4luck irish4luck is offline
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Join Date: Oct 2011
Location: Green Bay, Wisconsin
Posts: 12
10 yr Member
Thumbs up Thanks lorigood243

I greatly appreciate the moral support and health advice. I do have a pain specialist that I trust and can easily talk to. My original pain specialist (Physiatrist) referred me to an Advanced Pain Management clinic due to the increase in new RSD symptoms in my mid-section. I started again on the Lidoderm patch for my stomach area and it seems to help. Thankfully, I have an awesome and loving fiance who is my "rock." My family is supportive too.

What types of medical interventions have other RSD patients received who have stomach pain, spasms, vomiting, and nausea? I have been advised to stay away from products like Tums because of the high sodium content. I have put on about 40 pounds since the RSD symptoms began effecting my stomach. The extra pounds can be frustrating, but I try to focus on things I can control regarding my RSD symptoms.

My Motto:


RSD is part of me,
although it's not what others "see."
I make each day a new beginning,
I just wish it would also be "thinning!"
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Old 02-23-2013, 11:08 PM #3
lorigood243 lorigood243 is offline
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Join Date: Jul 2010
Location: Northern Virginia
Posts: 224
10 yr Member
lorigood243 lorigood243 is offline
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Join Date: Jul 2010
Location: Northern Virginia
Posts: 224
10 yr Member
Default Reply to Irish4luck

I Like your Motto

I was at 309 when this started...I put on 148 pounds...I lost 80 last year ad am eating low carb and doing some exercises in bed trying to lose more.
I take nausea meds all day and eat tums and heres my list

Fentanyl 100 pain patch 1 every 3 days
20mg Methadone twice a day
8mg dilaudid 4 times a day
excedrin and ibprofen 3 times a day
Promethezine 25 mgr 3 times a day for nausea
Reglan 1 10mg 4 times a day for stomach problems like acid reflux
pantaprozole 40mg to help my stomach empty
tums mixed in throughout the day
vetolin inhaler im asthmatic
prednisone 30 mgr each day to keep down the rsd swelling ..i have 80lbs of swelling on my abdomen from the 2 surgeries i had in 2005 and 2006 no matter what they try the selling wont come off. the prdenizone seems to help it from growing
stool softners for constipation
neurotin 400mgr 4 times a day for nerve pain and aggitation
Janumet 50/150 for diabetes
atenol for high blood pressure

all my body systems have been totally messed up since the 2 major surgeries I had.
my body acts all day long like i just had surgery yesterday. the nerves never recover. Now that it has spread to my lower legs i use lipoderm patches on them and muscle cream like Aspercreme

I have to count my blessings that each day i wake up and have my hubby next to me to love and care for me. I am so thankful for him. I would be alone and sad in a nursing home if it werent for his love. He makes sure i stay happy. He makes me get up and go out once a week on the weekends. he makes me do my exercises in bed. He brings me wonderful meals all day. He makes me smile and laugh when he tells me jokes.
I must have done something right early in life to be cared for as I am. I pray EVERYONE here on this board and all who are ill have support and are taken care of. My twin girls are 21 and at college. I have one who calls me twice a day and the other one is busier and she calls me every other day. They are so sweet. I am blessed. I pray that God will heal meal. I want to support others who are ill. If I were healed I could do Gods work. Many years ago I had Fibromyalgia and had a prayer healing after suffering with it for 10 years. I was totaly debilitated from it. I was healed for 5 years until i had the gallbladder surgery. I have learned now that people with Fibromyalgia are predisposed to getting RSD. So Iknow what healing feels like and I know it happens instantly. Thats what happened to me. So I am waiting on the Lord to heal me again. In His time not mine.

Sorry for this long rant. I hope something in all that I wrote helps someone.
Love and blessings to all
Lori


Quote:
Originally Posted by irish4luck View Post
I greatly appreciate the moral support and health advice. I do have a pain specialist that I trust and can easily talk to. My original pain specialist (Physiatrist) referred me to an Advanced Pain Management clinic due to the increase in new RSD symptoms in my mid-section. I started again on the Lidoderm patch for my stomach area and it seems to help. Thankfully, I have an awesome and loving fiance who is my "rock." My family is supportive too.

What types of medical interventions have other RSD patients received who have stomach pain, spasms, vomiting, and nausea? I have been advised to stay away from products like Tums because of the high sodium content. I have put on about 40 pounds since the RSD symptoms began effecting my stomach. The extra pounds can be frustrating, but I try to focus on things I can control regarding my RSD symptoms.

My Motto:


RSD is part of me,
although it's not what others "see."
I make each day a new beginning,
I just wish it would also be "thinning!"
__________________
Wishing you a day of pain free movement that turns into forever!
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