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 07-20-2012, 09:21 AM #21
polarisgold polarisgold is offline
Junior Member
 
Join Date: Feb 2009
Posts: 21
15 yr Member
polarisgold polarisgold is offline
Junior Member
 
Join Date: Feb 2009
Posts: 21
15 yr Member
Talking Repl

Quote:
Originally Posted by Jimking View Post
You've had RSD since 98 and never seen a pain specialist? If that is the case keep in mind not all pain specialist are equal, so don't get discouraged if you run into one who knows absolutely nothing about RSD. Educate them if at all possible and bring your wife with you if possible too. Very important to have someone bat for you, very important.
There is only one pain doc available to me due to Medicaid and our small population. This doctor does have experience with rsd....fortunately.

Up to this point I've gotten by with Lyrica 600mg and Tramadol 300mg a day. Sometimes I can move around and bare the pain most times I can't. The drugs really only help when I stop moving and preferrably sitting in my lounge chair.

I've tried my best to stay off narcotics due to all the bad things I've hear about them but now I'm ready to become a zombie if thats what it takes and maybe get somesort of electric scooter thingy.....I hate the thought.

Thanks for writing me....
polarisgold is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
loretta (12-27-2012)
Old 07-20-2012, 09:22 AM #22
polarisgold polarisgold is offline
Junior Member
 
Join Date: Feb 2009
Posts: 21
15 yr Member
polarisgold polarisgold is offline
Junior Member
 
Join Date: Feb 2009
Posts: 21
15 yr Member
Default

Quote:
Originally Posted by alt1268 View Post
Keep in mine what happened to JOB. He also suffered, but through it all he never faulted against GOD and in the end he prevailed.

Look on my albums there is a picture of my rollabout. You put your knee on it and push with the other foot.
Job was healed.

Thanks for taking the time to write me.
polarisgold is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
loretta (12-27-2012)
Old 07-20-2012, 09:27 AM #23
polarisgold polarisgold is offline
Junior Member
 
Join Date: Feb 2009
Posts: 21
15 yr Member
polarisgold polarisgold is offline
Junior Member
 
Join Date: Feb 2009
Posts: 21
15 yr Member
Default Reply

Quote:
Originally Posted by betsykk View Post
I too would most definitely recommend ketamine. It as helped my daughter so much with her pain.
I've tried to do the ketimine thing and money was always a problem that stopped me in my trackes

I even had a doctor that would do all the work for free but the hospital would not help me.

Its sad that a life is worth so little to some people.

I'd love to know the details of your daughters Ketimine treatment to show my wife.
polarisgold is offline   Reply With QuoteReply With Quote
Old 07-20-2012, 09:29 AM #24
alt1268's Avatar
alt1268 alt1268 is offline
Member
 
Join Date: Aug 2011
Location: delaware
Posts: 904
10 yr Member
alt1268 alt1268 is offline
Member
alt1268's Avatar
 
Join Date: Aug 2011
Location: delaware
Posts: 904
10 yr Member
Default

Polaris,

Try the rollabout before going electric. Your insurance should cover it. Also, people who are in pain, do not usually have addiction problems as long as they are taking medication because of pain.

it is the others who become addicted. (YES you will have withdrawls, but not like an addict would)

P.S. Yes JOB was healed. So hold that thought close to you that GOD knows when he will heal us, we just have to have faith and use the dr.'s that he gave us.
__________________

.


GOD help me be faithful in the midst of my suffering. Alt1268
alt1268 is offline   Reply With QuoteReply With Quote
Old 07-20-2012, 09:39 AM #25
polarisgold polarisgold is offline
Junior Member
 
Join Date: Feb 2009
Posts: 21
15 yr Member
polarisgold polarisgold is offline
Junior Member
 
Join Date: Feb 2009
Posts: 21
15 yr Member
Default reply

Quote:
Originally Posted by mbrgold339 View Post
Paul, Sadly this disease robs us of a full life. As another said, Life is about the small things. I was diagnosed in 2000. In 2004 I carefully planned and tried to execute (excuse the pun) my plan for suicide. Much to my dismay I awoke intubated in an ICU two weeks later. The recovery from my botched attempt left me worse off than before. Now, I just have that as another RSD related diagnosis on my health record. I understand getting to the point of no return. I understand the struggles. The effect we have on our family and what friends we have left. BUT. had I been successful, I would have missed my daughters wedding, the birth of my darling (now 4 yr old) grandaughter, and now sharing my daughters second pregnancy. I pray you can find focus away death. Today is a really bad day for me. I'm diverting my attention to avoid further frustration. I now understand the adage "one day at a time" Sometimes "One minute at a time" Look for the small things an avoid the elephant in the room. There's no doubt, this disease sucks but until God calls you home, there is purpose in your being. I will pray for solace.
Excellent words! I wonder sometimes how long it will take for inactivity to kill us. Certainly its not good to sit around all day. Yesterday I spent about 18 hours in my lounge chair, an hour outside and the rest in bed. I know I'm wanted and needed by my wife and daughter but sometimes that just does not seem to be enough.

Thanks for sharing with me. There is an afterlife, if certain of that and I think that will keep me from offing myself. Lord willing the pain want get worse!

Thanks again.....Paul
polarisgold is offline   Reply With QuoteReply With Quote
Old 07-20-2012, 09:41 AM #26
polarisgold polarisgold is offline
Junior Member
 
Join Date: Feb 2009
Posts: 21
15 yr Member
polarisgold polarisgold is offline
Junior Member
 
Join Date: Feb 2009
Posts: 21
15 yr Member
Default

Quote:
Originally Posted by RSD31 View Post
hi i know where you are coming from if you want to talk please call me i have had RSD since 1980 from a car accident an they did not get it right ontil 1988 and i'm still going today Jerry 807-274-6907
Thanks Jerry. I will keep your number handy. It would be nice to know what treatmnets you have tried.
polarisgold is offline   Reply With QuoteReply With Quote
Old 07-20-2012, 09:47 AM #27
polarisgold polarisgold is offline
Junior Member
 
Join Date: Feb 2009
Posts: 21
15 yr Member
polarisgold polarisgold is offline
Junior Member
 
Join Date: Feb 2009
Posts: 21
15 yr Member
Talking

Quote:
Originally Posted by AintSoBad View Post
Paul, I'm Pete... I've had RSD, tos, several vertabrae, and apnea, then an aquirired head injury since '83 then another traumatic injury in '98. Add them up.
Just had a full body bone scan and results last week It's All bad.
Full Body pain Constantly even with methadone, and other meds, anti depressants, etch.
Still, I've come to realize mostly from the folks here, that I'd only be Increasing the Pain on my family (whom don't even speak to me). They're right!
Why the hell would I want to do that?
No pain that God would allow us to go through, that he didn't let his Son, is worth it!!!!

So, what kind of Puss would that make us?

Get your *** to a doctor who will give you the meds that will help!
This is NO WAY to talk!

Print this entire list out, and take it to the doctor with you!
GET Help, you've got painful depression~

I love you, and so do all of us here!

Please, Paul, I want to hear back from you!!!! OK?


Do this, and do us All a favor!

Stop this crazy thinking, and get the relief you need!
It IS AVAILABLE!
SEEK IT OUT!

I'm Here For You!

I'll be checking back!

(We can't leave phone #'s or email Addy's here, because the search engines will pick them right up, but, you can PM Me, or any of us!) OK??????

Gonna be looking out for you!


Pete

Remember, I've had this bear, and More, since '83! That's taking me on 30 years! Have lost Everything..... Now, I've got to start rebuilding! And, You can too!!


XO
I will let you know what the doctor says but that want be until the end of August. I'll be hanging around untill then.....so to speak.
polarisgold is offline   Reply With QuoteReply With Quote
Old 07-20-2012, 09:49 AM #28
polarisgold polarisgold is offline
Junior Member
 
Join Date: Feb 2009
Posts: 21
15 yr Member
polarisgold polarisgold is offline
Junior Member
 
Join Date: Feb 2009
Posts: 21
15 yr Member
Default

Quote:
Originally Posted by scottym View Post
Brother, your life can be joyous again. But the doctors are only going to mask your pain, not tear it out by the roots. I was diagnosed with RSD same year as you, 1998, but I learned how to rid myself of it by 2000. I haven't had any symptoms since then. It would be my honor to share with you what I learned. Shoot me a direct email or respond to this post I'll tell you what you need to know. (btw, it doesn't involve any medical treatment -- it's all stuff you do by yourself in the comfort of your home and -- best part -- doesn't cost anything.) Whatever you decide to do, my heart goes out to you. No one should have to suffer like you are.
mrpaulpoole@gmail.com

I'll be waiting on your reply.
polarisgold is offline   Reply With QuoteReply With Quote
Old 07-20-2012, 10:13 AM #29
polarisgold polarisgold is offline
Junior Member
 
Join Date: Feb 2009
Posts: 21
15 yr Member
polarisgold polarisgold is offline
Junior Member
 
Join Date: Feb 2009
Posts: 21
15 yr Member
Default

Quote:
Originally Posted by mellowguy View Post
Pleaase re-think all your options. I have had rsd since 1997 but, was not diagnosed until 1999. I recieved it due to a work related injury and had several surgeries. I tried Trigger point injections, Acupuncture,a tens unit, a hot tub (medical reasons=tax right off), massage therapy,physical therapy for 14 months. I'm on a variety of pain killers but, only takes the edge off. I thought of leaving this world many timed because of pain. But because of my children I find other things thast actually work. I noticed when I hold my pet cockatoo, my pain level goes down. Somethiing about caring for an animal helps. I also listen to music that calms me. But, the one thing I did find that helps, and this is for information only. I was advised by a relative who works in the medical community to try a little marijuana, I found out just by going to Google and type in "Medical Marijuana" and you'll find over 15 states that have it legal for certain diseases including RSD/CRPS. I tried it and found within minutes my pain was diminished enough that I can live a life. I can leave the house, visit friends, do gardening and a lot of thiings around the house I couldn't before for 11 yrs. I'm in contact with my state legislature who is in favor for legalizing marijuana for medical use, We would be the 16 or 17th state to legalize it for medical use. It stopped my ides of going to sleep for good. Just type in "Medical Marijuana" on Google or ASK.com and you'll be surprised. Be sure to consult your Dr. before trying anything not prescribed. Good Luck
My state of Idaho is anti pot. There are a few legislators that may introduce a bill to legalize for medical use. At this point I don't care about the stupid law. Wasinton is medical pot legal. I guess I need to find some on my own. All through high school I belonged to a group of kids that delt pot...kind funny now. Thanks for letting me know of your experience.
polarisgold is offline   Reply With QuoteReply With Quote
Old 07-20-2012, 12:32 PM #30
Jimking Jimking is offline
Member
 
Join Date: Mar 2009
Posts: 879
15 yr Member
Jimking Jimking is offline
Member
 
Join Date: Mar 2009
Posts: 879
15 yr Member
Default

Quote:
Originally Posted by polarisgold View Post
My state of Idaho is anti pot. There are a few legislators that may introduce a bill to legalize for medical use. At this point I don't care about the stupid law. Wasinton is medical pot legal. I guess I need to find some on my own. All through high school I belonged to a group of kids that delt pot...kind funny now. Thanks for letting me know of your experience.
If you do it on your owe be careful. If you start seeing a pain specialist most likely they may drug test you periodically (seems to be extremely popular these days). If they find a drug in your system not prescribed or even an elevation of those prescribed drugs can put a damper on doctor-patient relationship.
Jimking is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
polarisgold (07-20-2012)
Reply

Tags
crps, rsd


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
A Cure???? tamiloo Multiple Sclerosis 6 02-05-2010 11:42 PM


All times are GMT -5. The time now is 05:25 PM.


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.