[GalenaFaolan]

The myths about RSD you know or have experienced. What are some of the most myths/misunderstandings about RSD?

The first one that pops into my mind are on spread, that it doesn't. Sure it doesn't. The other is it will go away in 6 mo, a yr or two. Well, I should be all better then!

What others are out there that my swiss cheese brain is failing to grab onto?

Hugs,

Karen

[SandyRI]

Originally Posted by GalenaFaolan

The myths about RSD you know or have experienced. What are some of the most myths/misunderstandings about RSD?

The first one that pops into my mind are on spread, that it doesn't. Sure it doesn't. The other is it will go away in 6 mo, a yr or two. Well, I should be all better then!

What others are out there that my swiss cheese brain is failing to grab onto?

Hugs,

Karen

My twin sister is an RN with a master's from Univ of PA, and is married to a surgeon who was also educated at U of P. - They swear that RSD is always a misdiagnosis of something. In other words, they don't believe in it. And they tell me that a significant percentage of the medical profession doesn't believe in it either.

I have been tested for Lyme 4 times (including the Western blot test), Lupus, and RA. I've have my sed rate tested a number of times. I've had MRI's. I had my latest Lyme test done just last week (My PCP asked me to please wait a while before asking for another one, because my personal insurance co was going to start asking questions).

All evidence continues to point to RSD. Just like the rest of you.

I understand that there are a number of judges in the WC courts that refuse to believe in RSD as a diagnosis. And that medical liability lawsuits in some states can run into the same problem, unless they are heard in front of a jury.

So my answer is that there appears to be a huge "MYTH" regarding the "existence" of the syndrome, even among well educated medical professionals.

Sandy

[Jimking]

Originally Posted by SandyRI

My twin sister is an RN with a master's from Univ of PA, and is married to a surgeon who was also educated at U of P. - They swear that RSD is always a misdiagnosis of something. In other words, they don't believe in it. And they tell me that a significant percentage of the medical profession doesn't believe in it either.

I have been tested for Lyme 4 times (including the Western blot test), Lupus, and RA. I've have my sed rate tested a number of times. I've had MRI's. I had my latest Lyme test done just last week (My PCP asked me to please wait a while before asking for another one, because my personal insurance co was going to start asking questions).

All evidence continues to point to RSD. Just like the rest of you.

I understand that there are a number of judges in the WC courts that refuse to believe in RSD as a diagnosis. And that medical liability lawsuits in some states can run into the same problem, unless they are heard in front of a jury.

So my answer is that there appears to be a huge "MYTH" regarding the "existence" of the syndrome, even among well educated medical professionals.

Sandy

Social Security now recognizes RSD or CRPS as a real chronic pain disorder so let them chew on that.

"Fibromyalgia
Lupus
Chronic Fatigue Syndrome
Multiple Sclerosis
Ankylosing Spondylitis
Chronic Headaches
Reflex Sympathetic Dystrophy
Rheumatoid Arthritis
Traumatic Brain Injuries
PTSD
Mental Illness
Bipolar Disorder
Depression
Muscular Dystrophy
Huntington's Disease
Multiple Sclerosis
Hepatitis C
Diabetes
Congestive Heart Failure
Cancer
Lung Disease
Multiple Chemical Sensitivities
Complex Regional Pain Syndrome"

I've sat with two doctors who told my wife she's a nut because RSD does not spread, I was shocked. As time went by I became numb to the ignorance and when the third one said that it didn't spread I looked straight into his eyes with all certainty and told him it does and he should look it up. He took me very seriously and never questioned it again.

[AintSoBad]

This kind of thread can be infuriating, especially after reading Sandy's response.
Oh, for how long I went through that, 7 years with no diagnoses!
Entire family thought it was in my head, I thought it was in my head, but no, NOBODY felt "This Kind" of pain.
RSD Pain is Unlike any other kind I've ever felt!

I'm so Angry!

When Educated people, Especially Family members, say that this doesn't exist, (rather than look it up, and find a way to help), then, You Know, that the problem is Far Deeper than De Nile!
Grrrr.


~~~~~

Long time ago, I was never gonna tell this story, so I'll abbreviate it.
My Doctor and Lawyer, set out to PROVE to the Ins industry that RSD Does Indeed Exist!
And, they did.
When most people were getting laughed out of court, or getting a few thousand dollars.
I became the Poster Boy for RSD.
(I had fired 5 attorneys, who wanted me to settle for 50 G).

My Doc / Lawyer / Myself, Broke through the "Ceiling", for RSD settlements.

It was the most arduous trip I had ever been on. I thought I was losing my mind at times, and I did lose a lot.
But, I did it for so many more than just myself, and my family.
The entire landscape of the rsd community changed from that day forward.

In a "Moment" on vacation in the FLA Keys, @ the tiki bar, where every one runs during the early afternoon thunderstorm, a gentleman pulled in and sat next to me at the bar. We chatted of course, and He told me he was in the Ins. business and an adjuster for large accident claims. I told him, Oh, really, I settled an accident recently.
Yes, well, you gotta hear this, he tells me, there's this crazy "new thing" out there, nobody knows what it is, but, since there's a two year statute to file a claim, we have no control over how it gets "cured", and it has to be "cured" within six months! (These are some Myths).
Some guy, up north just got a crazy amount that's sending shock waves through the entire industry!
He said the three letters.
R-S-D.

I extended my hand again, and told him my Last name. OMLord!
His jaw dropped.
I actually met the guy that signed my check, and couldn't believe what "soft tissue" could be! RSD.

Tell me, did God arrange this "meeting" or what?
We wished each other well, the sun came out, and we both carried on!
I asked him please, you look at me, and I'm not in a wheel chair, and I have all my limbs. I look, OK. But, you have No Idea, the Screaming Agony I live with! Just because I'm here now, enjoying beautiful weather, doesn't mean, I won't be in bed, crying tonight. And, I was.
Keep this in mind, everytime a claim with RSD comes across your desk, and please, take it to your Ins Seminars with you, spread this info far and wide!

Btw, the $, did hardly anything for me. My "carcass" has been picked over by wives, and attorneys. So, please, don't think me wealthy. I'm wealthy because I have friends, friends like ya'll here, and everywhere. Love.

Pete
Asb

[daniella]

Hi. I have seen a few specialists who supposed to deal mostly with rsd and I too have been told that it can only be in the limbs. I have severe eye problems that the 10 eye docs and every specialty can't figure out so that is why I asked. I do not understand this since I know a few people with rsd in their eyes and also a few people like even on here who have it in their organs.
If an invasive treatment does not work and I asked what will help me if I end up in worse pain and they said psychotherapy. I do feel it has a place the mental coping but to a degree.
A lot of the one size fits all treatments I call it
As for family and friends that is hard as many even with all the education in the world don't understand. I try to focus on the people who do like my mom and the others that they are clueless. My grandfather blames my past for my rsd as I had anorexia but they are in no way connected or I got yelled at because I don't do yoga and that is why I am not better. My mom though never lets me give up and always points out when I am doing better or things I have achieved so I try to focus on that. Mostly from people who I am not that close to like distant family and friends I just want a call to say hi not what they feel I should be doing or what I am doing wrong.

[daylilyfan]

"it will burn itself out"

I have been told this by a few docs. My family doc says I won't have to put up with it for more than a couple years as it will burn itself out. She says she has several patients that had it, and it's always burned itself out. I told her I have had it since 2001... It has settled down a bit, but it has also spread from one foot to both feet, a calf, to shoulder, arm, neck, half my face, my upper back.

Hmmm.... wonder when that burn out is going to happen?

[Dew58]

that it is ok to put ice on my knee..all day..all night, to ease that burning pain I kept complaining about to doc and PT!
This from orthopod doc that did my last knee surgery...little did I know that ice enhances RSD, and makes pain worse!

[GalenaFaolan]

Thanks all! :-)

Yup, ice is a big no-no! Before I knew I had rsd I used ice on my knee. I wondered why I was always in a lot more pain when I did. It was because of the pain I stopped doing that. The 2nd round of pt I about smacked the woman there. First thing she did was grab ice and I told her, "Oh no you don't! I have rsd and you can't put ice on me. You can only use the moist, heated towels on me...heat only!" She gave me a look but I stood my ground. I wasn't being given any pain meds thanks to wc so keeping my pain under as much control as I could was vital. She was a dummy anyway. LOLOL

Hugs,

Karen

[Imahotep]

One doctor told me that if I didn't want to have RSD I wouldn't have it!

The guy was pretty smart though and was able to figure out what it was from the name (RSDS). Fortunately he wasn't my doctor so I didn't even need to fire him. It is interesting he'd never heard of the condition before.

I've always found that people who do well believe it's entirely skill and good living and those of us with problems always believe that it's bad luck or just the breaks.

...Go figure.

[CRPSbe]

Originally Posted by Imahotep

One doctor told me that if I didn't want to have RSD I wouldn't have it!

Right, and if we want fairies and gnomes to exist, they will. And if we want to win the lottery, we will. Power of the mind, ya know. I suppose we're some kind of "new" or "different" species then, right. Please!