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 03-08-2007, 10:56 PM #1
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Default Give Us Guys A Break?

No No! Not you ladies! I'm talking about the doctors once again. We/Us Guys, Men, Males, what have you seem to get a bad rap in the RSD/CRPS department alot. Now I know you ladies think - oh boy here he goes whining and whining, but it's true. Take a guy like me for instance. Here I am 6'5" tall and weighing in at just under 250 lbs. Now I look a little intimidating to some - Maybe, maybe not. Who knows. Now here I am walking into a Neuros Office or whoever complaining of Chronic Pain. "It hurts Doc I Tell Ya"! Now this Doctor who we'll call Dr. Dork steps back and takes a long look at "Big Ole" me and thinks to himself "What A Freaking Baby"! "He Needs To Suck It Up". Why do I say this? Well today I got my hands on a medical record from one of my Neuros from back in 2000 and that is exactly what he wrote. Now I am sure he never would have expected me to see that, but since I am going through Disability, I am seeing all kinds of things. I was SHOCKED!

Plus I have read recently that of course RSD/CRPS is more common in Women than Men but I also read that it is more difficult to detect and diagnose in Men. So I'm thinking that unless I am crawling into the Doc's Office I'm what? LYING???? Please!!!!! I would rather run naked through a thorn grove than to ever consider trying to deceive to convince someone that I have something like this if in fact I didn't. So for all you guys out there with RSD/CRPS believe me I truly understand the difficulties we face everytime we walk into the Doc's Office. I am by no means minimizing the effects of RSD/CRPS on Women and I truly do understand the h**l you all go through as well. But there still is substantial differences between Men and Women regardless of how we came to get RSD there is still substantial differences in the diagnosing and treatments between Men and Women with RSD/CRPS. But the one thing I feel quite sure of is that there is absolutely NO difference in the amount of pain we endure every single moment of every single day of our lives!!!! - My hat is off to you all.
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MARKY MARK THE MAN FROM MAINE...GOT RSD AND LOST HIS BRAIN!!!. AND NOW HE HAS TO USE A CAIN!!!
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Old 03-09-2007, 12:43 AM #2
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That response from the doctor sucks and I think you may want to try another.

Gentle Hugs,

Rain
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Old 03-09-2007, 03:29 AM #3
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Default Yep

Try being 5' 10'' and ex powerlifter weighing in now at only 200. When I first started seeing the doctors I was 250 and solid. They thought I was faking for sure. Even with pictures of the surgeon screw up they thought I should be healed. So yes Mark, we have it harder then ever. Especially when you seem to look healthier than the doctors.

I prolly could have bench pressed all of them at one time lol. The look on their face when they find out they had to get a bigger blood pressure cuff was priceless, but really hurt my believability.

7 years has passed and it is getting a little easier as my body is starting to show the ravages of RSD, and the evidence piles up. It is to bad they ignore emg's, ekg's, angiogram photo's, our word, and consider us just a bunch of drug chasing losers.

I hope one day they will find out they were judging a book by its cover, instead of by its content. Like we wanted to take a cut in salary to chase disabilty pay. I know I did.
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Old 03-09-2007, 04:55 AM #4
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Default Men hurt too!

I have experienced the same in Australia. I could be described the same way - male, large frame and about 6 feet two with a big bushy beard. I have been ignored by the Doctors and in Australia I simply cannot find one who will listen to me about MY CRPS.

Grin and bear it and play the mickey-mouse games doing the psycho-babble courses. They want me to do this for 3 consecutive weeks 9-5 living away from home, not at the hospital but in a divey hotel and walking to and from the hospital (1/2 a mile each way) each day!! If I could do even part of that through this nightmare of CRPS, I would be working!!!!They tell me everyone in any pain says this. I reply I am NOT everyone.

They treat ALL pain the same way - no meds and learn to live with the pain. I did that already as I am sure you all have.

I have a science background and question, question, question but I either get untruths or no answers. Soldier on men (and ladies too) we are all in a deep hole with very steep sides.

It is very disturbing and brings to bear a huge load when you have worked all your life - actually liking your job and then being stuck with the disability pay - wow what a goal to aspire to!

Doctors who know about the condition in Australia are few and far between and after 5 years of this #$@^%, I am in the too hard basket so they listen even less.

Best regards - a fellow sufferer.

Last edited by Auberon; 03-09-2007 at 05:02 AM. Reason: Additional point
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Old 03-09-2007, 06:07 AM #5
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Would be very interested to know where you live Auberon as we are inundated with wonderful, knowledgable Doctors here in Victoria to treat us!
Have you tried the ozrsd site, you will get the details of some very special doctors there!
cheers Tayla
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Old 03-09-2007, 10:07 AM #6
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Yup, bout time we heard it for the guys.......GO GUYS!!
and welcome Bassman! Good to have you here,

all the best!
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Old 03-10-2007, 01:03 AM #7
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Thanks for the understanding all.

For Tayla, I am on the outskirts of Sydney. My GP is wonderful but NSW Health limits what he can do so I am stuck with a Pain Specialist.

The thing about it being in your head is intriguing and puts the doctors on shakey ground. It is worth haviing a look at the work published in the Journal of Pain by Massechuesets General Hospital (Feb 2006) that proves quite a number of nociceptors in the affected area are dying. The pain is REAL. It has a real cause.

Have been to doctor after doctor for the insurance company; They ALL agreed that I have a serious case of the CRPS (displaying nearly all of the clinical signs and symptoms all the time). They cannot treat me as they have worked for the insurance company in a medico-legal sense.

Unfortunately the treating doctor is the obstacle.
The current treating specialist power dresses and has his office set up so you cannot view his face easily. Uses the classic interrupt when questions are raised and cuts short the consultation - I am an easy physical and mental pushover since CRPS grabbed me.

As an idea the orthopaedic surgeon immediately post-operatively told me to throw away my crutches an just walk.

I have tried 3 specialist pain management facilities in Sydney and all have put me in the too hard basket.

One single type of medication helps and allows "some" function but my specialist won't titrate the dose to see what quality of life I might achieve. I have so far demonstrated no side-effects. This must be initiated through a hospital or pain specialist.

I just want a little bit of my life back.....you all know.... being able to hug my wife.....carry on a conversation without losing track when the pain score flairs to a 10/10.....it is hard enough to speak fluently at a 7/10 (normal).

I truly appreciate the in-absentia and gentle hugs they do help. So even though I am new to you all.
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Old 03-10-2007, 01:11 AM #8
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Hi Aussie,

I want to welcome you abroad. We are a great bunch here. Hugs, Roz
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Old 03-10-2007, 03:53 AM #9
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Hi Auberon,

Welcome! Many thanks for your very interesting post - which is the single med that helps, if I may ask? Hope we can help some - even if it's only the virtual hugs, but you're right, they do help....

all the best!
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Old 03-10-2007, 07:58 AM #10
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hi guys,

my brother was a big guy too....6'3", about 210 lbs, and he complained about the same thing (he had back problems after a bad car accident)....he used to say "i'm BIG, but i'm not made of stone".

it's outrageous for all of u, and i hope that u will find better docs, or some kind of help soon.

liz
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best to all,
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