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