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)


advertisement
Reply
 
Thread Tools Display Modes
Old 06-21-2012, 11:24 PM #1
Sandy Shores Sandy Shores is offline
Junior Member
 
Join Date: Jun 2012
Posts: 30
10 yr Member
Sandy Shores Sandy Shores is offline
Junior Member
 
Join Date: Jun 2012
Posts: 30
10 yr Member
Confused RSD beaten up by my OS

Today was pretty close to rock bottom. I'm writing this here as I'm hoping others with RSD might understand some of the pain and frustration I experienced...

After finally getting the big diagnosis from my PCP two weeks ago...I got in to seemg OS. He's the one that performed the surgery on my knee that kicked it all off. Trying to be as prepared as possible, I had faxed my OS a list of 8 questions I wanted to discuss during our appointment and wanted him to have time to review so he could provide answers. The appointment went nothing like I hoped. I only got one question answered before he decided it was necessary to do some physical manipulations on my knee and assess my ROM. HE bent and stretched me so badly that I was balling on the table from the pain. He smiled while I was laying ther crying and said "no pain, no gain"!!!

He then askes how much pain medication I was taking and when I told him, he yelled at me that I was an addict and that he can't continue to prescibe me narcotics because we would both get in trouble with the DEA!

He then sent me for a STAT bone scan which took most of the day. The Nuc Med doc who read the study said I have lots of arthitis in my knee (tell me something I don't know!). My OS also referred me to a PM doc to start me on Lyrica.

I finally got home after missing a whole day of work, racking up lord knows how much $ in fees for the test, getting few answers, in so much pain I can 't walk, and feeling totally violated and humiliated....like someone had just raped me and then told me it was my fault because I was wearing a short skirt!!!!

I am so lost! Why can't I find a doctor that actually cares? that has a clue and isn't going to keep wasting my time??? I read up on Lyrica, it sounds like there are a lot of potential side affects. I truly don't mind quitting the pain meds, but right now they are all I have to fight the pain..I just want it to stop and the nightmare to end.

Has anyone else had a similiar experience? Any one tried Lyrica? I want to stop seeing my OS, but my PCP advised against it, saying he's the best in town and no other OS will touch me with RSD.

I'm hoping tomorrow brings some answers and a better day...
Sandy
Sandy Shores is offline   Reply With QuoteReply With Quote

advertisement
Old 06-22-2012, 05:28 AM #2
LIT LOVE LIT LOVE is offline
Magnate
 
Join Date: Mar 2010
Posts: 2,304
10 yr Member
LIT LOVE LIT LOVE is offline
Magnate
 
Join Date: Mar 2010
Posts: 2,304
10 yr Member
Default

Are you taking more opiates than prescribed? If so, that's a problem. You may very well need to have a change in prescription to higher dosages, but that isn't something you can just arbitrarily decide for legal and medical reasons. If that means you need to make an emergency appointment with one or more of your docs, so be it. If you need to go to an ER, fine.

The last thing you need is a surgeon unfamiliar with RSD, but proceed with caution. He could cause you major problems.

Is he clueless? Yes. Even docs familiar with RSD cause pain on occassion when examining you. You may need to travel to a larger city to find a good RSD doc, or do more research to find someone in your area.

Regarding Lyrica, it may or may not help you. They're are lots of options to test out, and it's just one of many. Seeking out other non-opiate options is a good idea as well, because every little bit helps. Opiates are a reasonable option as well, but at the levels required to help with RSD, it does require a certain amount of trust between doc and patient. Expect to have to sign a contract about following dosages, and be prepared for urine testing.

I'm sorry you felt violated, but comparing this to rape seems inappropriate, in my opinion. You always have the right to ask for a nurse in the room during an exam, btw.

Good luck.
LIT LOVE is offline   Reply With QuoteReply With Quote
Old 06-22-2012, 09:26 AM #3
catra121's Avatar
catra121 catra121 is offline
Senior Member
 
Join Date: Jan 2010
Location: Illinois
Posts: 1,785
10 yr Member
catra121 catra121 is offline
Senior Member
catra121's Avatar
 
Join Date: Jan 2010
Location: Illinois
Posts: 1,785
10 yr Member
Default

I am so sorry to hear this. It is something many of us have dealt with...docs who don't know what to do or who don't care (or both). It is incredibly frustrating when you go in to discuss one thing and the doctor takes you off track, won't answer your questions, has no answers, etc. One suggestion would be to take someone with you to the appointment who will be in the room with you. I have found that even the worst doctors will generally be on their best behavior when they have an audience.

I was put on Lyrica in the beginning and it did help with the pain. Not a lot but it was one of the meds that was the most helpful in the beginning. I was switched to neurontin and that didn't help me at all but for some people it helps a lot. I think for me it was mostly that I was on the right combination of meds at the time I was taking the lyrica that made it as effective as it was.

But the meds were only part of the picture. Physical therapy is also important because the less you move, the more it hurts. It can get you into a terrible cycle of pain if you don't get enough pain relief to DO the physical therapy because the situation just gets worse and worse. Seeing a pain management doctor is probably a really good idea to help you juggle the different meds and treatments.

Unfortunately with RSD there is no set program for what works in every case. We all seem to respond to different treatments and meds. The important thing is to find what works best for you. You need to find a way to deal with the daily pain and then also have plans in place for flares and how you will cope with the pain in those moments.

I no longer take any pain meds and only use lidoderm patches and clonidine patches as far as medications go. This was after some severe interactions among the meds I was taking last year. I am very concerned now about the long term affects of medications and if I can find alternative treatments for my pain (TENS, ultrasound, tDCS, hot baths with epsom salts, etc) then those are what I want to go with. It means I have to push through a lot of pain on a regular basis but I am much happier with my treatment program now than I was when I was on all those meds. So as much as we are here to offer suggestions and share our own experiences, remember that it is up to you to decide what route is best for YOU.
catra121 is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
Sandy Shores (06-22-2012)
Old 06-22-2012, 10:39 AM #4
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

Sandy,

I am sorry for the way you were treated by your dr. Did you ask the pm if he is knowledgeable in rsd? If not keep looking. I don't know where you live but therre is a list of dr.'s on the rsdsa web site.

I know my ortho dr. didn't believe me either and it took 6 months for him to finally say I don't know what is wrong with you. That was my last contact with him.
__________________

.


GOD help me be faithful in the midst of my suffering. Alt1268
alt1268 is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
Sandy Shores (06-22-2012)
Old 06-22-2012, 10:54 AM #5
reluctant@thetable reluctant@thetable is offline
Member
 
Join Date: May 2012
Location: Wisconsin
Posts: 144
10 yr Member
reluctant@thetable reluctant@thetable is offline
Member
 
Join Date: May 2012
Location: Wisconsin
Posts: 144
10 yr Member
Default Welcome

Hi Sandy and welcome.

Very sorry to hear about your experience. Unfortunately, many of us have had experience with clueless doctors.

Considering the problems with your knee, have you tried aquatherapy? That would help keep mobility while putting less pressure on your knee joints. I am swimming at my local YMCA on the recommendation of my MD to spend at least 6 out of 7 days in the water for a minimum of an hour/day. (That's one of my many therapies.)
reluctant@thetable is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
Sandy Shores (06-23-2012)
Old 06-22-2012, 01:02 PM #6
nalakity nalakity is offline
Junior Member
 
Join Date: Apr 2012
Posts: 58
10 yr Member
nalakity nalakity is offline
Junior Member
 
Join Date: Apr 2012
Posts: 58
10 yr Member
Default Pain and Frustration

I completely agree with what LIT LOVE is saying about the meds. I myself am on lots of meds and they still sren't enough! The only thing that seems to help more than the rest are, unfortunately, my opiates. They are my life line.
However, I very much disagree with LIT LOVE about your rape comparison. I have thought very similar things at times. If this is how it made you feel...than NO ONE can tell you that that is inappropriate. It's hard not to have strong feelings about this...it is our LIVES after all. Much love and successful wishes from me to you!
Quote:
Originally Posted by LIT LOVE View Post
Are you taking more opiates than prescribed? If so, that's a problem. You may very well need to have a change in prescription to higher dosages, but that isn't something you can just arbitrarily decide for legal and medical reasons. If that means you need to make an emergency appointment with one or more of your docs, so be it. If you need to go to an ER, fine.

The last thing you need is a surgeon unfamiliar with RSD, but proceed with caution. He could cause you major problems.

Is he clueless? Yes. Even docs familiar with RSD cause pain on occassion when examining you. You may need to travel to a larger city to find a good RSD doc, or do more research to find someone in your area.

Regarding Lyrica, it may or may not help you. They're are lots of options to test out, and it's just one of many. Seeking out other non-opiate options is a good idea as well, because every little bit helps. Opiates are a reasonable option as well, but at the levels required to help with RSD, it does require a certain amount of trust between doc and patient. Expect to have to sign a contract about following dosages, and be prepared for urine testing.

I'm sorry you felt violated, but comparing this to rape seems inappropriate, in my opinion. You always have the right to ask for a nurse in the room during an exam, btw.

Good luck.
nalakity is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
Sandy Shores (06-23-2012)
Old 06-22-2012, 04:11 PM #7
LIT LOVE LIT LOVE is offline
Magnate
 
Join Date: Mar 2010
Posts: 2,304
10 yr Member
LIT LOVE LIT LOVE is offline
Magnate
 
Join Date: Mar 2010
Posts: 2,304
10 yr Member
Default

I was not trying to minimize what the OP went through, but rape is a violent crime that often effects victims in horrific ways for the rest of their lives.

Doctors are often in a position of power over us. They decide the meds we can take, and often are involved in decisions that can effect our financial well being as well. When they perform a surgery or procedure that is the catalyst for RSD, there can be many confusing emotions brought into the relationship. I am empathetic to all these things, and have struggled with many of these issues myself at one point or another.

When you don't have meds, treatments, or strategies to bring enough pain relief so that you're not experiencing constant, high level pain, I think it's very easy to become overwhelmed. I've been there.
LIT LOVE is offline   Reply With QuoteReply With Quote
Old 06-22-2012, 09:37 PM #8
Sandy Shores Sandy Shores is offline
Junior Member
 
Join Date: Jun 2012
Posts: 30
10 yr Member
Sandy Shores Sandy Shores is offline
Junior Member
 
Join Date: Jun 2012
Posts: 30
10 yr Member
Default just to clarify

I've actually been consistently taken less than he prescibes. That was partly why I was so shocked and dismayed by his accusation. I would LOVE not to take any medication at all, AND will admit to being 100% addicted to NOT being in pain.

Btw, I was assaulted in my twenties and am unfortunately familiar with what it entails.
Sandy Shores is offline   Reply With QuoteReply With Quote
Old 06-22-2012, 09:49 PM #9
Sandy Shores Sandy Shores is offline
Junior Member
 
Join Date: Jun 2012
Posts: 30
10 yr Member
Sandy Shores Sandy Shores is offline
Junior Member
 
Join Date: Jun 2012
Posts: 30
10 yr Member
Default alternatives

Thank you for the information on the patches. It's really good to hear some one is able to manage this without taking oral medications. I was curious if you have ever tried Acupuncture. I did once years ago for a shoulder injury. It provided complete relief from my pain for about a day. I was thinking this might be another alternative, but have some reservations about it's use with RSD since I haven't once seen it mentioned in any of my research....
Sandy Shores is offline   Reply With QuoteReply With Quote
Old 06-22-2012, 10:10 PM #10
Sandy Shores Sandy Shores is offline
Junior Member
 
Join Date: Jun 2012
Posts: 30
10 yr Member
Sandy Shores Sandy Shores is offline
Junior Member
 
Join Date: Jun 2012
Posts: 30
10 yr Member
Default pool

Thank you! This is a great suggestion!
Sandy Shores is offline   Reply With QuoteReply With Quote
Reply

Thread Tools
Display Modes

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
ramblings from the beaten down and tired mbrook Sanctuary for Spiritual Support 2 08-01-2010 05:23 PM
Baptist Pastor beaten and tazed by border patrol agents in AZ. Earl The Stumble Inn 15 04-18-2009 08:43 PM
Off the Beaten Path buckwheat Reflex Sympathetic Dystrophy (RSD and CRPS) 6 09-17-2007 06:06 AM


All times are GMT -5. The time now is 09:01 PM.

Powered by vBulletin • Copyright ©2000 - 2024, Jelsoft Enterprises Ltd.

vBulletin Optimisation provided by vB Optimise v2.7.1 (Lite) - vBulletin Mods & Addons Copyright © 2024 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.