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)

Reply
 
Thread Tools Display Modes
Old 10-30-2009, 04:50 AM #1
wildberry2277 wildberry2277 is offline
Member
 
Join Date: Jul 2007
Location: Minnesota
Posts: 129
15 yr Member
wildberry2277 wildberry2277 is offline
Member
 
Join Date: Jul 2007
Location: Minnesota
Posts: 129
15 yr Member
Red face Umm need someone to listen.. needed a little understanding ... *THANKS*

I guess i just need to talk to people who get it... Maybe u may not even get it... Last time this year well Novermeber first of last year... I sliped in to almost a 3 and half week coma.. how ever i am going to say right now it wasnt a coma... I was able to hear, see understand and some to vocalize... but when i did vocalize it didnt make sense... I lost almost 2 and half months.. I have no memory ... The last thing i defentivly remember was having my rib removed... Nothing in between... For that long pierod of time i was trapped in my own head.. I watched my family come in cry and worried that i wasnt going to surrive... Some said there last goodbyes... others cried.. and told me to hang on.. Others were baffled and joked with me.. Nurses... Some of those nurses or the most uncommpassonite people in the whole world... One of them told me that i would be spending my thanksgiving with the (i wont use the inapporite word) mentally challenged... and many other mean things.. It was horrible... Tommorrow i go under for a MRI... BC i cant handle the vibrations and the noise any more... Its causing me to much pain.. I dont know what to do... i am scared.. .and then i will be going under again... soon to get my spinal cord stimulator implnated... which i am scared.. of i dont know how much it will help.. When i had the trial... i was nauses 4 out of the 6 days i had it... So it was hard to get a judgement out of it... However when i slept.. Man did i.. Sleep.. So if i can get some normal sleep again i guess that is a miracle... I guess i am just afarid of being put to sleep.. and not having my brain be there does that make sense... I am just so scared.. SO SOSOSOSOSO scared... I dont know if what i just wrote even just made any sense... I am scared to death... No one really knows exactly why i end up where or why or what exactly happened.. No one even knows how long i was laying on my bedroom floor.... that night i went into that coma...

I guess it felt good just to write it out and calm my nerves a bit thanks for listen to me bable.. sorry if it didnt make any sense... if u have questions i can surely answer what i know...

Hope u all are doing well... Pain free day for all of u tomorrow is in my hopes...
__________________
Jacquelina
.
wildberry2277 is offline   Reply With QuoteReply With Quote
Old 10-30-2009, 07:58 AM #2
Kakimbo Kakimbo is offline
Member
 
Join Date: Sep 2009
Location: Galena, MD
Posts: 280
15 yr Member
Kakimbo Kakimbo is offline
Member
 
Join Date: Sep 2009
Location: Galena, MD
Posts: 280
15 yr Member
Default

Quote:
Originally Posted by wildberry2277 View Post
I guess i just need to talk to people who get it... Maybe u may not even get it... Last time this year well Novermeber first of last year... I sliped in to almost a 3 and half week coma.. how ever i am going to say right now it wasnt a coma... I was able to hear, see understand and some to vocalize... but when i did vocalize it didnt make sense... I lost almost 2 and half months.. I have no memory ... The last thing i defentivly remember was having my rib removed... Nothing in between... For that long pierod of time i was trapped in my own head.. I watched my family come in cry and worried that i wasnt going to surrive... Some said there last goodbyes... others cried.. and told me to hang on.. Others were baffled and joked with me.. Nurses... Some of those nurses or the most uncommpassonite people in the whole world... One of them told me that i would be spending my thanksgiving with the (i wont use the inapporite word) mentally challenged... and many other mean things.. It was horrible... Tommorrow i go under for a MRI... BC i cant handle the vibrations and the noise any more... Its causing me to much pain.. I dont know what to do... i am scared.. .and then i will be going under again... soon to get my spinal cord stimulator implnated... which i am scared.. of i dont know how much it will help.. When i had the trial... i was nauses 4 out of the 6 days i had it... So it was hard to get a judgement out of it... However when i slept.. Man did i.. Sleep.. So if i can get some normal sleep again i guess that is a miracle... I guess i am just afarid of being put to sleep.. and not having my brain be there does that make sense... I am just so scared.. SO SOSOSOSOSO scared... I dont know if what i just wrote even just made any sense... I am scared to death... No one really knows exactly why i end up where or why or what exactly happened.. No one even knows how long i was laying on my bedroom floor.... that night i went into that coma...

I guess it felt good just to write it out and calm my nerves a bit thanks for listen to me bable.. sorry if it didnt make any sense... if u have questions i can surely answer what i know...

Hope u all are doing well... Pain free day for all of u tomorrow is in my hopes...
Jacquelina...what a beautiful name!

I'm sorry to hear that you are going through this. Please know that we are all thinking of you, and hoping everything will turn out fine. It's always terrifying to go under; especially with what you've been through. I really don't know what I can say to make you feel better. Just know that I am thinking of you. Please let me know how it went.
__________________

.

.
Kakimbo is offline   Reply With QuoteReply With Quote
Old 10-30-2009, 08:21 AM #3
keep smilin keep smilin is offline
Member
 
Join Date: Aug 2009
Posts: 851
15 yr Member
keep smilin keep smilin is offline
Member
 
Join Date: Aug 2009
Posts: 851
15 yr Member
Confused Just wondering....

Quote:
Originally Posted by wildberry2277 View Post
I guess i just need to talk to people who get it... Maybe u may not even get it... Last time this year well Novermeber first of last year... I sliped in to almost a 3 and half week coma.. how ever i am going to say right now it wasnt a coma... I was able to hear, see understand and some to vocalize... but when i did vocalize it didnt make sense... I lost almost 2 and half months.. I have no memory ... The last thing i defentivly remember was having my rib removed... Nothing in between... For that long pierod of time i was trapped in my own head.. I watched my family come in cry and worried that i wasnt going to surrive... Some said there last goodbyes... others cried.. and told me to hang on.. Others were baffled and joked with me.. Nurses... Some of those nurses or the most uncommpassonite people in the whole world... One of them told me that i would be spending my thanksgiving with the (i wont use the inapporite word) mentally challenged... and many other mean things.. It was horrible... Tommorrow i go under for a MRI... BC i cant handle the vibrations and the noise any more... Its causing me to much pain.. I dont know what to do... i am scared.. .and then i will be going under again... soon to get my spinal cord stimulator implnated... which i am scared.. of i dont know how much it will help.. When i had the trial... i was nauses 4 out of the 6 days i had it... So it was hard to get a judgement out of it... However when i slept.. Man did i.. Sleep.. So if i can get some normal sleep again i guess that is a miracle... I guess i am just afarid of being put to sleep.. and not having my brain be there does that make sense... I am just so scared.. SO SOSOSOSOSO scared... I dont know if what i just wrote even just made any sense... I am scared to death... No one really knows exactly why i end up where or why or what exactly happened.. No one even knows how long i was laying on my bedroom floor.... that night i went into that coma...

I guess it felt good just to write it out and calm my nerves a bit thanks for listen to me bable.. sorry if it didnt make any sense... if u have questions i can surely answer what i know...

Hope u all are doing well... Pain free day for all of u tomorrow is in my hopes...
I am so sorry and feel that your concerns are valid.. Think positive and have faith in your Dr.'s... be sure not only that they know your history but also know your current fears. As far as the SCS.. is it possible since the trial helped you achieve good rest..then instead take something for a sleeping aid and not do the SCS esp. cuz you had nausea and your history of "coma" type state?? I have the SCS implant.. my trial proved positive (not even nausea)...so I went for the implant and unfortuantely.. it actually made my RSD worse.. of course, not the same experience for us all.. I wish you much luck...hang in there and feel free to vent to us and update us soon..
keep smilin is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
loretta (10-30-2009)
Old 10-30-2009, 09:59 PM #4
Sandel's Avatar
Sandel Sandel is offline
Member
 
Join Date: Oct 2006
Location: Western Canada
Posts: 844
15 yr Member
Sandel Sandel is offline
Member
Sandel's Avatar
 
Join Date: Oct 2006
Location: Western Canada
Posts: 844
15 yr Member
Default wow..

aww so sorry.. bigggggest warmmmest hugggs, I had a long post here then my laptop died so it's gone now..
my arms are too sore to write it again but I want to send my hugs hon, and to sugest that you let the anesthesist know all what you went through and they will make sure you are well sedated that day, and also very relaxed even the night before the procedure.. If they don't then request something because it does help.

Sandra
Sandel is offline   Reply With QuoteReply With Quote
Old 10-31-2009, 12:14 AM #5
loretta loretta is offline
Senior Member
 
Join Date: Feb 2007
Posts: 1,090
15 yr Member
loretta loretta is offline
Senior Member
 
Join Date: Feb 2007
Posts: 1,090
15 yr Member
Default

Quote:
Originally Posted by wildberry2277 View Post
I guess i just need to talk to people who get it... Maybe u may not even get it... Last time this year well Novermeber first of last year... I sliped in to almost a 3 and half week coma.. how ever i am going to say right now it wasnt a coma... I was able to hear, see understand and some to vocalize... but when i did vocalize it didnt make sense... I lost almost 2 and half months.. I have no memory ... The last thing i defentivly remember was having my rib removed... Nothing in between... For that long pierod of time i was trapped in my own head.. I watched my family come in cry and worried that i wasnt going to surrive... Some said there last goodbyes... others cried.. and told me to hang on.. Others were baffled and joked with me.. Nurses... Some of those nurses or the most uncommpassonite people in the whole world... One of them told me that i would be spending my thanksgiving with the (i wont use the inapporite word) mentally challenged... and many other mean things.. It was horrible... Tommorrow i go under for a MRI... BC i cant handle the vibrations and the noise any more... Its causing me to much pain.. I dont know what to do... i am scared.. .and then i will be going under again... soon to get my spinal cord stimulator implnated... which i am scared.. of i dont know how much it will help.. When i had the trial... i was nauses 4 out of the 6 days i had it... So it was hard to get a judgement out of it... However when i slept.. Man did i.. Sleep.. So if i can get some normal sleep again i guess that is a miracle... I guess i am just afarid of being put to sleep.. and not having my brain be there does that make sense... I am just so scared.. SO SOSOSOSOSO scared... I dont know if what i just wrote even just made any sense... I am scared to death... No one really knows exactly why i end up where or why or what exactly happened.. No one even knows how long i was laying on my bedroom floor.... that night i went into that coma...

I guess it felt good just to write it out and calm my nerves a bit thanks for listen to me bable.. sorry if it didnt make any sense... if u have questions i can surely answer what i know...

Hope u all are doing well... Pain free day for all of u tomorrow is in my hopes...
Hi Jacquelina,
My name is loretta-14-15 years into RSD. Wasn't diagnosed for 4 years. It started following surgery. Having had that experience, I can understand your fear. As was mentioned, I'm sure your surgeon and anthesiologist are aware of your medical history. My RSD Dr. just did a 200 person study of seroquel and it's affect on fibromyalgia, which I also have. A side benefit was restorative sleep. An extremely large percentage.I was having sleep issues and ambien cr wasn't working any longer.When I started seroquel, I started sleeping -I sleep 10 hours straight. I'm sure you have done a lot of research, as have we all.
I just can't imagine what all you and your family went thru. I woke up one morning about 5 years ago, and started stumbling and passed out.My husband was upstairs in his office and knew I was up, but didn't know I was unconscience. When I woke up, I couldn't get up, but crawled and hit on the door.He guess I was out about hour and half. I was in and out -paramedics told my husband I was dead, then got a pulse, pressure was 60/40. Spent 4 days in semi icu. I've had mri's before, and what helps me is to close my eyes before going in the tube. Then I use visualization. I visualize a beautiful beach in Hawaii, the waves, color of the water. visualize top of a mountain my daughter and I loved to ski, overlooking a gorgeous lake. It's a great way to reduce stress and put yourself in a restful state. Many Drs. offer valium, orther anti-anxiety meds before procedures. My dentist has me take anti-biotics and laughing gas. It's important to have our sympathetic nervous system as calm as possible.
Please let us know if you go thru with the surgery and how you are doing. Our thoughts and prayers are with you. your friend, loretta soft hugs
loretta is offline   Reply With QuoteReply With Quote
Reply


Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

BB code is On
Smilies are On
[IMG] code is On
HTML code is Off


Similar Threads
Thread Thread Starter Forum Replies Last Post
Listen Alffe Survivors of Suicide 18 01-25-2014 04:05 PM
why won't doctor's listen to us?? tiredofpain07 Reflex Sympathetic Dystrophy (RSD and CRPS) 74 11-11-2009 05:55 PM
Please listen for my bell and I’ll listen for yours.... Addy Survivors of Suicide 22 07-14-2009 06:49 PM
They just don't listen knittenkitten Pets & Wildlife 9 06-09-2009 02:20 PM
Do you listen to music and does it help? Mari Bipolar Disorder 13 03-29-2008 04:31 AM


All times are GMT -5. The time now is 01:12 AM.


Powered by vBulletin • Copyright ©2000 - 2025, Jelsoft Enterprises Ltd.

vBulletin Optimisation provided by vB Optimise (Lite) - vBulletin Mods & Addons Copyright © 2025 DragonByte Technologies Ltd.
 

NeuroTalk Forums

Helping support those with neurological and related conditions.

 

The material on this site is for informational purposes only,
and is not a substitute for medical advice, diagnosis or treatment
provided by a qualified health care provider.


Always consult your doctor before trying anything you read here.