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 06-21-2013, 08:48 PM #1
AZ-Di's Avatar
AZ-Di AZ-Di is offline
Member
 
Join Date: Mar 2013
Location: Arizona
Posts: 453
10 yr Member
AZ-Di AZ-Di is offline
Member
AZ-Di's Avatar
 
Join Date: Mar 2013
Location: Arizona
Posts: 453
10 yr Member
Default

Quote:
Originally Posted by Angelina55 View Post
I talked to my doctor and he put me back on my original meds. I am not back to where I was yet. I think I need to get 'caught up' then my pain will calm down. This crazy weather we have been having is NOT helping! Storms and temp change is sooooo not good for pain. But at least I have my pain meds back and that is helping. Tomorrow I will be talking to my Family doctor. I am nervous. I don't really know what to tell him, or where I need to go from here.
Sorry for the slow response, I was under sedation for nerve block. Have you already tried those? Sorry, I should remember since I know you already went through he!! with the trial SCS.
I hope your primary doc. gave you a referral to a different pain doc. That's how I found a good one - I went through 2 - asked for ANOTHER referral and think I have a good one now.
I'm glad you're eliminating as much negativity as possible. My P.T. gave me the best advice that you must be your own best advocate because so few people understand our condition.
No matter how much I just wish someone would speak out for me I try to remind myself what she said. Then I try to make myself say & do what I wish someone would do for me.
On top of your CRPS I know you've had incredible hurdles as well. My heart goes out to you and I hope you feel the support over the miles.
AZ-Di is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
Angelina55 (06-21-2013)
Old 06-22-2013, 03:57 PM #2
Angelina55's Avatar
Angelina55 Angelina55 is offline
Member
 
Join Date: Feb 2013
Location: Post Falls, ID
Posts: 175
10 yr Member
Angelina55 Angelina55 is offline
Member
Angelina55's Avatar
 
Join Date: Feb 2013
Location: Post Falls, ID
Posts: 175
10 yr Member
Default

Quote:
Originally Posted by AZ-Di View Post
Sorry for the slow response, I was under sedation for nerve block. Have you already tried those? Sorry, I should remember since I know you already went through he!! with the trial SCS.
I hope your primary doc. gave you a referral to a different pain doc. That's how I found a good one - I went through 2 - asked for ANOTHER referral and think I have a good one now.
I'm glad you're eliminating as much negativity as possible. My P.T. gave me the best advice that you must be your own best advocate because so few people understand our condition.
No matter how much I just wish someone would speak out for me I try to remind myself what she said. Then I try to make myself say & do what I wish someone would do for me.
On top of your CRPS I know you've had incredible hurdles as well. My heart goes out to you and I hope you feel the support over the miles.
I have done nerve blocks. My doctor wants me to do acupuncture now. I have already been to the pain management doctors in my area and they have already sent me on my way saying they can't help me. Thank you for the support. I really need it right now. I can feel my positivity slipping away.
Angelina55 is offline   Reply With QuoteReply With Quote
Old 06-24-2013, 08:16 PM #3
ger715 ger715 is offline
Magnate
 
Join Date: Jul 2011
Location: Illinois
Posts: 2,180
10 yr Member
ger715 ger715 is offline
Magnate
 
Join Date: Jul 2011
Location: Illinois
Posts: 2,180
10 yr Member
Default Angelina,

Quote:
Originally Posted by Angelina55 View Post
I have done nerve blocks. My doctor wants me to do acupuncture now. I have already been to the pain management doctors in my area and they have already sent me on my way saying they can't help me. Thank you for the support. I really need it right now. I can feel my positivity slipping away.

I am so sorry you have not been properly treated with Pain Management physicians. Most of them realize what chronic pain can do to a person and are more proactive in treating the pain. I was fortunate to be referred to my current Pain Management doctor by my orthopaedic doctor.

Hold on Angelina........ I pray you will soon find the help you need in dealing with all this pain.


Gerry
ger715 is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
Angelina55 (06-25-2013)
Old 06-29-2013, 12:18 AM #4
finz finz is offline
Senior Member
 
Join Date: Feb 2007
Posts: 1,804
15 yr Member
finz finz is offline
Senior Member
 
Join Date: Feb 2007
Posts: 1,804
15 yr Member
Default

Hi Ang,

I'm relieved that you got your doc to put you back on your previous med plan. That's moving in the right direction. I understand that it's only a temporary fix. If he doesn't "get" it, we can all guess that he won't have the best long term pain management plan for you. I understand that searching out a doc who does "get" it is difficult.

I'm lucky to have a great neurologist right now. Because my insurance has denied other treatments for my RSD, pain meds are my plan for now. I currently take Cymbalta, Neurontin, Nortriptyline, Piroxicam, Norco, and MS Contin. I am in a MUCH better place pain management wise than I was years ago. Life is by no means perfect. I still have to recognize my limitations, so I can't do everything I'd like to (or, even most of it ), but I can do more than I could and I can enjoy more time with friends and family. I can LIVE, instead of just being alive. My neuro writes for my narcotics. Some idiot at my health insurance company doesn't like my neuro, and he is no longer on their list of preferred providers. That means that I can't use my insurance to pay for them. I can only afford them (over $200 a month) because I'm still married. After my youngest graduates from high school next year and I get divorced, I'll be screwed. I SHOULD be looking for a new neuro now, even though I LOVE mine, and start saving that money, but it's so hard to figure out how to find another doc who gets it.

Let's be honest, we can't just call around to dr's offices and ask the receptionist if that doc prescribes narcotics. We REALLY can't just try a new doc, transfers our records to him, go in for a visit and find out THEN that he doesn't prescribe meds, so then we have to try another new doc, and another.....and now we are "doctor shopping". It is hard to not appear to be "drug seeking" when we are, in fact, seeking meds to help with our pain OR a cure/treatment that would fix everything. I don't want to ask my neuro for a referral to another doc, because I don't want to insult him or change neuros. I have asked my primary doc to help with my dilemma, she refused. I would like a new primary MD, but I just switched to her 2 years ago and I don't want to switch again now and then again in the next year or two post divorce when I move.....because that would look like doctor shopping.

I understand that it's difficult to search out the right doc. Transportation issues.....how far away the office is, how often you might need to see him, if you can tolerate driving, if you need to arrange a ride.....can be a huge issue. Wasting more time waiting for an appointment with yet another "pain specialist" who only does injections that don't work for you......Feeling uncomfortable about insinuations by some docs/their staff because you are a chronic pain patient......It's easier to just try to get through the day and say you'll "deal with it tomorrow".
__________________

.


Gee, this looks like a great place to sit and have a picnic with my yummy bone !
finz is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
Angelina55 (06-30-2013)
Old 06-29-2013, 02:08 AM #5
Brambledog Brambledog is offline
Senior Member
 
Join Date: Jul 2012
Location: England
Posts: 1,122
10 yr Member
Brambledog Brambledog is offline
Senior Member
 
Join Date: Jul 2012
Location: England
Posts: 1,122
10 yr Member
Default

Well said Finz - you should be assisted by the RSD groups to publish that in every medical paper around, send a copy to every doctors surgery in the country, not to mention the drug companies and insurance guys. If only they understand the difference between a chronic pain sufferer, and a drug seeker. The two are poles apart...

Hope you are having a better day Angelina

Bram.
__________________
CRPS started in left knee after op in Aug. 2011
Spread to entire left leg and foot, left arm, right foot.

Coeliac since 2007.
Patella femoral arthritis both knees.

Keep smiling!
.
Brambledog is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
Angelina55 (06-30-2013)
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
Church- too loud to attend...or go for it. Jeffrey Traumatic Brain Injury and Post Concussion Syndrome 12 09-06-2011 10:09 PM
Anyone ever attend an MS expo? doydie Multiple Sclerosis 3 05-26-2011 12:15 PM
Do you attend W/C hearings? withmore Thoracic Outlet Syndrome 4 08-24-2007 07:31 PM


All times are GMT -5. The time now is 12:35 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.