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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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07-28-2009, 03:48 AM | #11 | |||
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I am supposed to make an appointment for pt this week. Doc thinks I need it for my hip that is losing bone density. Last time I went they couldnt get me to improve...go figure lol.
Was workin my ankle, and he told me that I was stopping at the same rep count everytime on purpose. So he had someone come in and talk to me so I couldnt count with him. He did that for 3 days, then told me there was no way he could help me because I was still stopping at the same rep, meaning there was no improvement, and I was complaining that it was hurting too much to continue lol. I am a firm believer in use it or lose it, But use it, but dont hurt it. You know where that line is. The key to everything is moderation
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07-28-2009, 08:20 PM | #12 | ||
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It's likely that one of the reasons I have RSD is that after a 2nd rotator cuff surgery (after which the surgeon placed a 3 day continuous catheter of anethesia directly into my incision), I was put into a really aggressive 3 day a week PT program at the surgeon's own facility. It was absolute torture, and I still can't believe that I didn't call it quits sooner and let those people hurt me so badly. The woman PT who was in charge of my care never seemed to believe me when I told her she was hurting me, or that I couldn't complete the number of reps that she wanted me to. By the time I was referred to a PM doc, about 2 months or so after my surgery, I could barely move my arm. What really stinks is that I saw copies of my PT records and my symptoms that they wrote down were classic RSD - burning, stabbing, poking, feels like she's on fire, etc.
Months later, when my RSD had been diagnosed and had spread into my neck and head due to trigger point injections done by the PM doc, I wrote a letter to the therapists that had hurt me so badly and told them about my RSD. I gave them the link to the RSDSA website, and told them that all of my symptoms had been classic RSD. Hopefully my letter might save someone else from having the same thing happen to them. I swear they thought I was a drug seeker and a malingerer. When it was time for me to go back to work at 6 weeks post op I had lost over 20 pounds and was a mess. The doc wrote me another script for more percocet and put me out of work for another few weeks. My PT was totally disgusted. I should have walked out on the spot. I still can't understand why I didn't. RSD has made me a much stronger person. I stick up for myself much better and more quickly now than I used to. I've made sure to go back and let the people know who hurt me what happened. I now have a great PT, and I am trying to build a good team of doctors. I plan to go after, in whatever legal fashion that is available, the people that hurt me. Too bad that it's too late to fix me, though. Sandy |
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07-28-2009, 10:30 PM | #13 | ||
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Doctors are morons. PT are worse, doctor wannabes. Most have not seen an RSD patient even when it bit them in the butt. I saw two in 20 years that I recognized; well after the fact unfortunately! Very humbling...karma now, I guess. I tell all my docs (and PT who is actually great) you can't know what RSD pain is like until you've lived it. They just look at me with their mouth half open. Can't understand from reading about it in a book, can't feel it by looking at it; just can't really know jack #$&! about it until you've been there, done that! |
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07-30-2009, 11:15 AM | #14 | ||
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I have really good drs. They belive me. My problem is family. They think iam putting on some kind od show. They don't think i should take pain meds and tell me to just deal with it. That alone is painful. Sometimes i wish they could just feel it for an hour or two. I don't think they could "" just dea with it "".
Sue k. |
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07-30-2009, 02:10 PM | #15 | ||
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"Thanks for this!" says: | Mslday (08-02-2009) |
08-01-2009, 11:23 AM | #16 | ||
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Amen. That's the advice my grandmother always gave me.
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08-01-2009, 11:28 AM | #17 | ||
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"Thanks for this!" says: | sue k (08-04-2009) |
08-01-2009, 11:40 AM | #18 | ||
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Thankfully, I have found one who isn't a moron, and tell ya the truth, I've seldom met someone who is so compassionate. I was in this week, and was telling him about what was going on in my life, which is pretty screwed up. Sorta have two women living here, a 15 month old baby boy and my lady is preggers with another, 5 months along. I got permanently laid off of the best job I've ever had, wrecked my car right before I got to the doc, and the pain is spreading down my leg into my foot. I cheerfully said, "here, check it out, run your hand down my leg, warm, warm, warm, cold as the dead there, see? Pretty neat, huh?" He pulled himself closer to the table, kinda rested himself on it, looking very tired, and I told him, "man, you look tired as hell." He told me he wasn't tired, just noted "you're going through so much right now, must be really hard." He looked as if I had backhanded him, really blew my mind. Whatta guy, I can't say enough good about him, frankly. After years of twits, with one exception besides him, I was shocked. He has compassion, really messed with me. I ended up feeling bad for him, for he is carrying my pain with him, and that's something to behold. May y'all find as good a doc as I have, makes all the difference in the world.
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"Thanks for this!" says: | Dubious (08-01-2009) |
08-01-2009, 10:25 PM | #19 | ||
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My PM doc is up on everything. With my last 20 yrs in health care, I have challenged him on every thought and not only does he have the most up to date answer, he is delicate and understanding. What I was talking about was the surgeons, almost all of them, in that they don't get it; they view us as a bad outcome, of not their doing, who simply needs to be transitioned anywhere other than their office! |
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"Thanks for this!" says: | Mslday (08-02-2009) |
08-03-2009, 04:41 AM | #20 | ||
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I could see that being the truth. They could cut all day and it ain't gonna make a bit of good outcome, in all likelyhood. I've noticed that after all their training is done, more than a few new doctors come out looking at humans as test subjects or something. "Here, try this. You have any weird or bad effects, be sure to write them down...and let me know..." I find this attitude contradictory to the Hippocratic oath frankly, and wish that they all had more concern for their patients than anything else. People's lives are on the line.
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