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)


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Old 04-09-2017, 05:36 PM #11
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Quote:
Originally Posted by CRPSbe View Post
**. Only a doctor can make that diagnosis. So having a good physician is key, one who is familiar with the condition so s/he can either diagnose it or rule it out.
**

I said what I thought, based on my own experience and my history of loooking at hundreds of CRPS pictures. I also asked a question about a procedure which could potentially lead to a clear diagnosis.

Osteopenia looks markedly different from patchy osteoporosis, which is why another X-ray is necessary. http://cdn.intechopen.com/pdfs/29546.pdf


A comment was made about the burning not being present early, this is not true. I had severe burning pain very early on.

I saw multiple medicos who could not diagnose me, despite my having a classic presentation. (You can see my photos, they are posted here) My co-worker suggested that it might be CRPS, based on her experience with a friend who had it. She diagnosed me months before any doctors did!

I strongly suggest that anyone with CRPS buy a heat temp gun. Mine is from Black and Decker. With this you can accurately measure the temp of your limbs for comparison. Take a pix of the results. The degrees of difference in the CRPS limb should assist anyone in making his case. Do not allow doctors to touch to guesstimate temp, their hands are not thermometers. Thermography and CRPS - Treating Complex Regional Pain Syndrome


From RSD Hope, please read the last sentence:
Quote:
Description - Four Stages of CRPS

Doctors may classify CRPS into different stages. Although now most Doctors use these simply as guidelines since the more that is discovered about CRPS the more they learn that there are no definable timetables for these stages especially with the advent of the new terminology of CRPS TYPES I and II.

For more on the problems with using stages to classify CRPS be sure to read the information that follows
"THE FOUR STAGES OF CRPS" below.

**Editing in Link as quoted text is from a website that has COPYRIGHT**copyright © 2017 American RSDHope All rights reserved

CRPS Stages or RSD Stages - American RSDHope

Last edited by Chemar; 04-11-2017 at 08:52 AM. Reason: Per NeuroTalk Guidelines
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Old 04-11-2017, 04:51 AM #12
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Quote:
Originally Posted by BioBased View Post

**

I said what I thought, based on my own experience and my history of loooking at hundreds of CRPS pictures. I also asked a question about a procedure which could potentially lead to a clear diagnosis.

(...)
**Don't forget, please, that I went without a proper diagnosis for almost 3 years, and was in pain and in bed for 24/7 all that time.

But still I think it is up to doctors and not laypersons on a forum. I think that's a pretty slippery slope, personally.
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Work related (car) accident September 21, 1995, consequences:
- chondromalacia patellae both knees
- RSD both legs (late diagnosis, almost 3 years into RSD) & spread to arms/hands as of 2008

Last edited by Chemar; 04-11-2017 at 08:52 AM. Reason: Per NeuroTalk Guidelines & because quoted post has been edited
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Old 04-11-2017, 05:49 AM #13
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Quote:
Originally Posted by CRPSbe View Post
**Don't forget, please, that I went without a proper diagnosis for almost 3 years, and was in pain and in bed for 24/7 all that time.

But still I think it is up to doctors and not laypersons on a forum. I think that's a pretty slippery slope, personally.
**

**

If I had followed my doctors orders it is a fact that I would be permanently crippled, in agonizing pain and bedridden. I think that this is the slippery slope to avoid. I can walk, I can go to the gym, I can drive again, it's true I am not 100%, but it sure beats the pathetic alternative the doctors offered me. I chose to "own" my disease and ironically I have been complimented by my doctors for this.
**

Last edited by Chemar; 04-11-2017 at 08:54 AM. Reason: Per NeuroTalk Guidelines and becuase quoted post was edited
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Old 04-11-2017, 07:19 AM #14
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This discussion has sadly taken a turn that our guidelines specifically prohibit.

We will be closing it for now, and reviewing it for edits needed.

Apologies to all discussing in accordance with guidelines, and especially to the new member who started this thread.

We hope to reopen the thread soon.
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Old 04-11-2017, 09:00 AM #15
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I have done some edits in accordance with NeuroTalk's Guidelines
Community Guidelines -- Updated 4/8/2015

The thread has now been reopened but we will be monitoring it to ensure that members do not bring their personal disputes onto the forum. It is not fair to other members and most certainly not encouraging for a new member.
Not everyone can be expected to agree all the time, but all members should be able to disagree respectfully and within our guidelines.

If anyone has further comments on the need for moderation here, please contact me via PM so that this thread can return on track.

Thank you
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Old 04-11-2017, 09:40 AM #16
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I apologize and will adhere to the guidelines. I had no idea I was doing anything wrong. Sorry.
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All the best, Marleen
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Work related (car) accident September 21, 1995, consequences:
- chondromalacia patellae both knees
- RSD both legs (late diagnosis, almost 3 years into RSD) & spread to arms/hands as of 2008
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Old 04-11-2017, 09:43 AM #17
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Quote:
Originally Posted by zette67 View Post
I fell down some stairs at work and the first thing I felt was immediate horrible burning in my foot/ankle and it hasn't gotten any better it's actually moving up my lower leg. Because I fell at work they MADE me use Workmans Compensation and I wasn't able to see a doctor until a month later. I have the horrible burning I mention, pin/ needles, I have surges of pain shooting from my foot up my leg, my foot at times seems frozen to the touch. My ankle will not move at all and I can't put any pressure on my foot. Now I developed something that looks like brown bruises going up my leg and it's painful. It feels like I always have something crawling on my foot/ankle,I have discoloration where my skin is red/green/bluish like color, it's constantly swollen and I can't bare to touch it.
Here's my problem when I saw the doctor initially he said it was CRPS and he set me up with Pain Management and Physical Therapy, I had two blocks and one blocked helped for a day it did not stop the burning at all. Workman's Compensation requested a Bone Density Test on me , I got the results back the next day that said based on the Bone Density Test Results that I did not have CRPS. Now the doctors are telling me nothing wrong with me, the Pain Management doctor refused to see me. My condition seems to be deteriorating day by day. My muscles in my left foot/leg are so tight until it's extremely painful on top of everything else.
Bone density is something that deteriorates in late stages (osteoporosis). And you were diagnosed with CRPS? Right?

Now they are saying it isn't that due to the BD test?

That's why they invented 2nd and even 3rd opinions. I'd go see a different doctor and let your GP manage your files, if s/he's not already doing that.

What does your GP say of all of this?
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Work related (car) accident September 21, 1995, consequences:
- chondromalacia patellae both knees
- RSD both legs (late diagnosis, almost 3 years into RSD) & spread to arms/hands as of 2008
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