It appears you have not yet Signed Up with our community. To Sign Up for free, please click here....



Reflex Sympathetic Dystrophy (RSD) (CRPS) Message Board
Post New Thread   Closed Thread
LinkBack Thread Tools
Old 10-12-2011, 06:55 AM   #1
Member
(female)
 
sophia554's Avatar
 
Join Date: Feb 2011
Location: Michigan, USA
Posts: 53
sophia554 HB Usersophia554 HB User
At my pain ceiling; looking for advice...

Every day I am in more pain than I imagined possible. My right leg still feels the worst but now my body is on fire from the top of my head to my toes. Breathing seems difficult, keeping medications and food down for the last two days has been impossible. I am seeing my PM doctor on Friday. I saw his colleagues a couple of days ago and they indicated then that there is nothing that can be done. They sent me home with morphene to help the additional muscle/body pain as I am already on a good deal of gabapentin. I am titrating off of nortriptyline as it doesn't help and exacerbates my sui__dal ideations. I don't know what to ask for; I don't know what to do. Sympathetic blocks did nothing (made it worse if anything). I begged them to just put me under so I could get some sleep but even strong sedatives don't fool this level of pain and I was awake again in a half of an hour. I know you all know what this is like- and I commend you for being so strong because I don't know how anyone survives this level of pain?!
So we are readdressing my treatment on Friday and I need your suggestions badly- even if just because it is getting harder and harder to think. Thank you so much and good luck.

 
The following 3 users give hugs of support to: sophia554
Coffee4J (10-12-2011), Kjzachrich (10-31-2011), K_Lana (10-13-2011)
Old 10-12-2011, 03:24 PM   #2
Junior Member
(female)
 
Join Date: Oct 2011
Location: Forest Hills, New York
Posts: 17
Imamooch HB UserImamooch HB User
Re: At my pain ceiling; looking for advice...

Ok, I was where you are at the end of July. My RSD is on the entire left side of my from my toes to my neck. My doc did a popilteal block which turned the nerves off in the lower portion of the leg, done in behind the knee. That worked the first time he did it, the second time didn't do what we expected. He increased my dosage of baclofen, and put me on methadone. The methadone made me sleep a lot and did help with the pain, but left me useless to do anything. This was a short term measure for me as 5 days after being put on the methadone, I was put into the hospital for an inpatient ketamine infusion. Ketamine is the one thing that works for me when all else fails. I have been dealing with this for over 4 years. If your docs don't do ketamine and you want to travel to NY I can give my doc's info.
Stay strong. I know it is almost impossible to, but you have to be stronger than the pain.

 
The Following User Says Thank You to Imamooch For This Useful Post:
sophia554 (10-12-2011)
Sponsors Lightbulb
   
Old 10-21-2011, 02:53 PM   #3
Member
(female)
 
sophia554's Avatar
 
Join Date: Feb 2011
Location: Michigan, USA
Posts: 53
sophia554 HB Usersophia554 HB User
Re: At my pain ceiling; looking for advice...

WOW, thank you for your advice and I am sorry it took me so long to get back with you- I spent the last couple of weeks in the fetal position or getting sick to my stomach from pain. Even the light fromy my computer screen hurt...you know how it goes.

So both the severity of this "flare/progression/development/***-ever" and the info in your post, I realize I really need to broaden the way my CRPS is being treated. I think because I have only been w/my PM for a year and he is still testing out all of the psychogenic factors and secondary physical issues that he is being a little conservative in his treatment. He also may have reached the end of his toolkit in terms of what he himself does to treat the disease. I had an appt with him and also with his psychiatrist colleague addressing my concerns related to this. I told them I was concerned that additional actual physical damage as going on (no one can go without food or sleep forever, right?) while we were tiptoeing around trying out antidepressants and extremely painful unsuccessful nerve blocks.

Don't get me wrong, I REALLLLLY respect my doctor. He is extremely smart and supportive and I am damn lucky to be his patient but I definitely want to see other specialists and pursue additional treatments. The info on your specialist in NY would be great.

I'm still a total physical mess right now but thanks to seroquel and morphene (the morphene for a week only), I am getting enough sleep to keep me from losing it. Seeing the PM and colleagues again in a week- they are taking me seriously I think so we shall see if that opens up any pathways to more treatments.

What do you do about the overall disability caused by your lower limb CRPS? Are you able to walk? I'm a horse trainer so I have had to be really creative (like ride a horse everywhere creative) and I'm looking for ideas or hope that some aspects of the actual disability will up and walk away some day...

THANK YOU THANK YOU!!

 
Old 10-29-2011, 08:32 AM   #4
Junior Member
(female)
 
Join Date: Oct 2011
Location: Forest Hills, New York
Posts: 17
Imamooch HB UserImamooch HB User
Re: At my pain ceiling; looking for advice...

Look him up on the Hospital for Special Surgery website. His initals are D I R. If you choose to go to him tell him Lisa and Maggie sent you. They all know me and my little service dog

 
Closed Thread

Similar Threads
Thread Thread Starter Board Replies Last Post
Pain killers may work differently for men and women sswallow Reflex Sympathetic Dystrophy (RSD) (CRPS) 0 03-11-2011 02:38 AM
Increasing Burning & Deep Pain dee_navymom Reflex Sympathetic Dystrophy (RSD) (CRPS) 12 04-08-2007 06:11 AM
"Golden Ticket" for FAST E.R. Pain Meds LeftyKid Reflex Sympathetic Dystrophy (RSD) (CRPS) 3 05-31-2006 03:11 PM
More Pain Than Usual! redhd4 Reflex Sympathetic Dystrophy (RSD) (CRPS) 6 07-20-2005 04:50 PM
CRPS - Is Pain Doctor able to DX? Budko Reflex Sympathetic Dystrophy (RSD) (CRPS) 12 06-03-2005 04:38 PM




Thread Tools

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 Off
HTML code is Off
Trackbacks are Off
Pingbacks are Off
Refbacks are Off




Join Our Newsletter

Stay healthy through tips curated by our health experts.

Whoops,

There was a problem adding your email Try again

Thank You

Your email has been added








TOP THANKED CONTRIBUTORS



painman2009 (56), Kev629 (41), K_Lana (32), kelly4004 (28), jewlz67 (27), sswallow (24), laurav (12), destinyevans (9), SloRian (9), mellow (9)

Site Wide Totals

teteri66 (1180), MSJayhawk (1013), Apollo123 (909), Titchou (856), janewhite1 (823), Gabriel (763), ladybud (755), midwest1 (670), sammy64 (668), BlueSkies14 (607)



All times are GMT -7. The time now is 06:02 AM.



Site owned and operated by HealthBoards.comô
Terms of Use © 1998-2014 HealthBoards.comô All rights reserved.
Do not copy or redistribute in any form!