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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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03-08-2007, 10:56 PM | #1 | |||
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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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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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03-09-2007, 03:29 AM | #3 | |||
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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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. Gone Squatchin |
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03-09-2007, 04:55 AM | #4 | ||
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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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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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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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03-09-2007, 12:21 PM | #7 | |||
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I started reading this post and responding because I thought there was a need for some genuine support.
I cannot believe that the doctors give y’all this kind grief. It mentally makes sense, but it is quite appalling. The more of you that post, the more that I am angered!!!! I am not real trustworthy with doctors to begin with but I am a small petite woman and in some cases, especially with doctors that know me, I have not had any major problems. I did in the beginning arm myself with knowledge, just to be prepped to fight with them. Lucky for me, all my doctors at least have heard of RSD and know to be careful touching and turning. It breaks my heart that y’all have to fight harder just because you are men and are expected to put on that brave face. This is Crap! Plain ole' Crap! All I can say is try to arm yourself with knowledge, fight them with brains. Take information that proves that this illness, cause more pain than most people experience in a lifetime. Gentle Hugs, Rain
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03-09-2007, 12:24 PM | #8 | ||
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Dear Mark,
I posted this link before. If your up for it, maybe you could take the time to read it. http://www.rsds.org/4/stories/ben_lynch_speech.html Love, Roz ooooo |
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03-09-2007, 05:39 PM | #9 | |||
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true actually... that does really suck - the perception that being a big guy means you are "strong", "brave" and other labels (which in turn suggest that you should just "put up with it!). But at least you aren't female (youngish female) and thus automatically neurotic... EVEN when the drs agree that 100% is physical!?!
The whole labelling thing sucks - especially with RSD! It is either a psych issue, a weakness issue or some bizzare type of gain......... Rooting for you all! This IS unfairt treatment! How about taking a sexism case to court?! Love ya all FRxxxxxxxxxxxxxxx
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It's always darkest just before dawn... but smile and the world smiles with you, cry and you cry alone |
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03-09-2007, 08:05 PM | #10 | |||
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It's too bad that you not only have to go through the pain you go through and then see those words on your medical records.
I wonder at times if it's the fact that these Drs. don't know what to do for CRPS patients that makes them make the patient look stupid to keep them from looking more stupid then what some of them are. I know before I was diagnosed with TOS and RSD I was in so much pain I was suicidal, even more so then what I am today. I got so mad at my Dr. at one time I asked him if it was a woman thing. He told me not to even go there. He was pulling his hair out trying to figure out what was going on with me and he was sending me out from Dr. to Dr. to get my Diagnoses. It took me over 3 years to get my diagnoses. He was stumped as he had only had one TOS patient in his 20+ years, the same with my PA. For him to say what he did in your paperwork makes me believe that he didn't have the knowledge to diagnose you so he just turned the tables on you to make him look less stupid. It took a hand surgeon to diagnose my RSD after I had seen Neurologist, PM Drs., TOS drs, and Rheumotologist. It has to be a special Dr. I think to be able to diagnose RSD. There seems to be so few Drs. in any field that knows anything about it. We all know our body, we know it's not in our head, why does it take so long to get that CRPS diagnoses. I bet you are right though about men. The Drs. most likely think that men are the strong ones that can deal with anything. It's so wierd to see both sides of the fence. The way that men are treated and the way women are treated. Don't let those words get to you. Don't loose any sleep over it, it's just one Dr. or so called Dr. anyway. Ada Ada |
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