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 09-04-2007, 12:08 AM #1
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Hey there,Vic!
You mentioned "A different stage when RSD turns cold". what excatly do you mean by this? I have had nothing but cold stage RSD since I first discovered, well the Ortho surgeon who did my carpal tunnal surgery in Jan. 9, of this yr.caught this RSD early. It is now Sept. Am I going to go into another stage, Vic?? I have NEVER had "hot, warm RSD".. So please, what do you mean by stages?? Am I going to feel the hot/cold in another Stage?? I'm confused here. And why do so many RSD'er's say, If your RSD is in the early stages.. the luckier, the better off I will be?? heck, I am not getting any better!! I had 3 SGB which, I wish I really didn't have sometimes, as these blocks did NOTHING and I mean NOTHING for me. Also, my PMD had to stop PT as this was making my RSD flare so bad. The pain, swelling is draining me, and all I want to do is sleep. On really good days, which are far and in between, so to say, I use my therapy ball, do some hand, wrist, shoulder excercises. My shoulder has been hurting me since March. I woke up one day in March, thought I slept wrong somehow on my shoulder, and now I can't even raise my arm above "chest level" My doc. asked me about ex-rays, my bone scans I had taken in April.(Of my shoulder) So, when I go in to see my PMD on the 10th. of Sept. I am going to ask "The dude" a lot of question's.(Also, he should have my ex-rays, bone scans in his, or shall I say; My records) Instead of making my RSD In the early stages(get better?) which was caught 31/2 mos. latter,when I had my surgery.. was conformed by 4 other doctors, including a hand/ wrist specialist, who came right out and said;"Your shot"!.. my last option he said was to take a vein out of my leg and put it in my wrist area, but he's not making any promises. So I'm damed if I do and damed if I don't?? Love, Desi Oh, and by the way, Vic.. You mentioned Vicodin ES in your other post, that it is far better then the time released morphine. don't ya think all that acetaminophen is bad for the liver?? Do you think Vicoprofen is better?? It is vicodin with Ibuprofen in it instead of acetaminophen? I was on the vicoprofen ES 7.50 and my PMD say's to stop that, put me on 30 mg. time released morphine, which quit working after a month. He then put me on 30 mg.(KADIAN) time released morphine 2x a day and now that is starting to not work.. and now, he's talking about weening me off! What the?? ok.. off my soap box here, just waiting for your reply back, Vic. thanks.. Desi(I know, I know.. so many questions.. LOL)
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Old 09-05-2007, 02:07 PM #2
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Hi Desi,

In light of the Administrations desire to see the thread where you originally posted return to the topic Steff began, I'll reply to your questions here.

(I know, I know.. so many questions.. LOL) As I just told Tayla, I love questions, and you’ve asked some really good ones.

I’m guessing your first question: You mentioned "A different stage when RSD turns cold". what excatly do you mean by this?is the one you most want answered, so here goes:

Throughout the early history of this disease, just about everyone agreed that RSD begins with warm, red and swollen skin. Nobody could figure out why this happens because nobody knew the immune system reacts to cell debris from physical trauma in exactly the same way it does to a viral infection. The warm, red and swollen skin is clearly inflammation.

Usually it takes a few weeks, and usually months, for the inflammation to expand throughout the limb and then become the cold, blue skin of cyanosis, but there is no reason to believe that it must happen this slowly. It is possible to have a very short inflammatory stage, which I’m sure you did since skin is almost always red and swollen following surgery. I would guess you may have had a very brief warm (inflammatory) stage, that was quickly followed by the cold (usually cyanotic) stage. That’s just my guess, but I’m pretty sure that warm followed by cold is so common that it might as well be considered universal.

The bottom line is that there is no reason to expect a second “warm” stage. Like the rest of us, your RSD is cold, and without some intervention that no one has yet found, we’re stuck in that stage for the rest of our lives.

Also, my PMD had to stop PT as this was making my RSD flare so bad. I know I wrote a long post about PT on some other thread here, but have no idea when; in it, I listed several reasons why I oppose any sort of weight-bearing or strengthening exercises (though we should continue to fight for range of motion forever). If RSD is IRI, any exercise at all is damaging our O2 starved cells. It is exactly the wrong thing to do. Yeah, we can’t all lay around all day like I do; you have to do things, but don’t overdo. If you don’t believe me, ask your body: Is this PT making you better or worse?

well the Ortho surgeon who did my carpal tunnal surgery in Jan. 9, of this yr.caught this RSD early. Every surgery means cutting the skin, and they almost always require the surgeon to either tie or clamp off tiny arteries in order to prevent blood loss and obscuring what the surgeon can see. This is the classic definition of an IRI: A modified tourniquet ischemia followed by the rest of the surgery.

Don’t blame your doc for blowing the diagnosis; he/she almost certainly never heard of IRI. Hardly anyone in the medical profession knows anything more about IRI than they learned in med school, and regular physicians almost never see an IRI patient.

It has an amazing history: It wasn’t even discovered, not even suspected, until 1963, yet in ten years researchers had not only discovered what causes it and how to prevent it. It still happens, but not very often, and it is usually treated by the surgical team. Regular docs may know less about IRI than they do about RSD.

IRI experts believe it only happens in internal organs or transplanted tissue (when the ischemia lasts so long that only special precautions can prevent all of the cells in the limb from dying). They certainly haven’t shown any interest in finding out whether it could happen in other types of surgeries. If you don’t look, you’re not gonna see anything.

So, if I’m right, almost every time RSD follows a surgery, it’s an IRI. Maybe some of you should encourage your docs to look into this IRI thing. Docs don’t like to do that kind of stuff unless there’s a damn good reason to do all that work, and having a patient say “Some guy on the Internet says RSD is an IRI; what do you think? He/she is probably thinking “Goddamn Internet”, but won’t usually say it. It won’t be easy, but if I’m right, it could be worth the effort.

You mentioned Vicodin ES in your other post, that it is far better then the time released morphine. don't ya think all that acetaminophen is bad for the liver?? I made what I now suspect was an erroneous statement about the equivalency between hydrocodone (vicodin) and morphine just a few weeks ago.

That statement was based on what my pharmacist told me 12 years ago, and my current pharmacist tells me he doesn’t agree that hydrocodone (vicodin) is much more efficacious than morphine.

I agree that vicodin contains dangerously high amounts of acetaminophen and don’t think that is a good option for chronic pain patients. Upon the recommendation from my pharmacist of 12 years ago, my pcp prescribed vicoprofen (hydrocodone with ibuprofen). I checked it out on Drug Info, and it seemed pretty safe. I took vico for about ten years, then discovered it had destroyed my esophageal sphincter. New warnings had been issued and had been unaware of them. I suggest everyone look up all your meds on Drug Info every few months; you never know what they may have learned since you last looked.

I don’t remember when or where I made that post, so I’m not exactly sure what I said there, but it was in reponse to posts that talked about the outrageously high price of morphine; I suggested oxycodone might replace morphine at a much lower cost.

He then put me on 30 mg.(KADIAN) time released morphine 2x a day and now that is starting to not work.. and now, he's talking about weening me off!

Find another doc. This guy is either totally caught up in the fear or making an addict, or he’s scared the DEA will accuse of that, but he isn’t thinking about what you need. You don’t need a doc like that.

The fact is that chronic pain patients don’t become pill addicts. We don’t want to get high, we just need pain relief. We are afraid of becoming addicted, and for the most part we usually choose to take less than we need because of that fear.

I hope you can find a doc who understands this. They are out there, and they can make a critical difference in our quality of life. I hope my clarifications are helpful to you…Vic
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Last edited by Vicc; 09-06-2007 at 02:00 AM.
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Old 09-05-2007, 03:25 PM #3
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Hi Vic!
Wow!! Thank you so very much for the info!! This has truly helped me very, very much understand more about all and I MEAN ALL the question's I have asked you!! It all makes so much sense! As for my PMD he is "now just referring me to a new Dr. who is an Indian dr."He, my PMD said when I seen you three weeks ago, you looked like you were getting better!! I thought the dude was kidding!! OMG.. I said, look I am having so much damn pain that.. he then stopped me, mid sentence and said, I understand.. I know I know.. ok, now just stop and let me tell you.. blah blah.. and I still want to see you on the 10th. of this month(What for more$$$) I am sick to death of this crap. treating us like we were the scum of the earth!! There go's my RSD in a flare just from remembering his words!! LOL Well,the new dr.'s receptionest called today and set up the app. When I asked my PMD I still have about referring me to this Doc. he said I don't deal with blocks, SCS, yada yada! I said to him;"How come all of you doctors keep pushing "US" type of patients into seeing another Dr. yet another.. another. he wanted to send me back to the PMD I used to have who would only give me the neurontin, told me no narcotics would help in this type of pain!! Vic, I came out of there actually in tears. (I am usually not the crying type at all) but this SOB was down right unpleasant, didn't even look at my RSD wrist, arm at the time, just sat on his *** and took notes! Well, when my hubby seen me come out in tears, he told him off but good! The whole recept. room heard all this too! And here my PMD wanted to send me back to him!! So, I told him, no.. I will not go back to him, as I told you that this guy and I do not hit it off at all!! I am not a mean, nasty person, but I wanted to rip his head off too! LOL Vic or anyone else, please.. what is IRI.. I am so ignorant to this abbrev. I have been racking my brain with this one! does IRI mean irreversible injury?? LOL I really do NOT know what IRI means?? someone?? Vic?? LOL Thanks again, Vic~Love, Desi
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Old 09-05-2007, 03:40 PM #4
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Desi

IRI is What Vicc is talking about in his posts its stands for Ischemic-reperfusion injury. He is debating that IRI is RSD and RSD is a result of IRI... i think thats how he is thinking.. Sorry Vicc.. I just wanted to pop in and tell you what it stands for bc Im not sure when Vicc could and i was online..lol. Also he has alot of info on IRI in our posts that we have been talking about under this post...Discussion of Vicc's Hypothesis on RSD, so your not lost anymore...

Take care
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Old 09-05-2007, 04:34 PM #5
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Thank you so much Amber! You truly are what your screen name says.. "An Angel"!! Thanks for replying to me, as I was waiting.. I said please.. anyone?? vic?? and here you told me what it means!! Thank you sweetie!! How have you been? I am going to go do some more researching, now. I am going to research Ischemic-reperfusion injury!! Yippie!! since I now know, thanks to you what it means! I am sitting here eating my dinner, heating pad on my shoulder, been here since morning. taking breaks of course!! LOL Thanks again Amber! Love ya~Desi
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Old 09-05-2007, 05:13 PM #6
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Hi again Desi,

Sorry I didn't reply sooner, but I am so weak and exhausted right right now that picking up my wireless keyboard and putting it across my legs is a strain.

I write about IRI but don't talk about the process in which a physical trauma leads to plugging of millions of microvascular systems (MVS), which means the cells served by those MVS will no longer get any oxygen or nutrients from them.

The IRI process is pretty well-understood, but it involves several distinct stages that must happen in the right order, and requires an understanding of the immune response to trauma, the different roles of white blood cells, the chemical weapon they use to destroy invading pathogens (and healthy cells), and finally how these WBCs end up blocking the MVS'.

It took several thousand words to try to explain it at BT, and most people didn't get far into it before their right brain told the left brain that it was going to take a nap.

I keep trying to put together a summary of what happens during IRI, but now how or by which of the factors I mentioned above; just a simple explanation of what happens. It has been a difficult task that I haven't managed to do in just a thousand or so words. I keep trying.

Right now I'm focusing on explaining exactly how ischemia can cause every sign and symptom of this disease. I hope that by seeing that it does, some people will take the time and effort to learn more about IRI.

Don't feel sorry for me because I'm so tired; it wears me out, but I'm having fun posting once again...Vic
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Last edited by Vicc; 09-06-2007 at 02:04 AM.
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