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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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Unread 02-10-2007, 09:03 PM   #1
agonyannie
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I have had complex regional sympathetic dystrophy since surgery Dec. 23, 2004. It was not diagnosed however until July 2006. I have had every opioid; anti convulsant, pain pump implants, and finally a dorsal column stimmulator. NOTHING has worked and I continue to suffer a searing, burning pain in my trunk. I do not have RSD in a limb, but all over my body. My pain is so bad that I developed Shingles (on my face) in December and never even knew it. I thought it was "just a rash." Now I am having difficulties with my insurance carrier METLIFE which believes I can go back to work even though social security considers me totally disabled. HELP--will there ever be something that works to relieve my pain? Has anyone ever gotten better? Why do so few physicians know about this disease? And how do you prove you even have it since pain is "psychological." thanks
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Unread 02-10-2007, 09:27 PM   #2
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Hi there- I don't know much about insurance and all that stuff but I do know how it feels to have nothing work!! Have you tried Ketamine infusion and or HBOT? I know those procedures have helped some people (not me of course) Feel free to vent here anytime- Maybe some of the others will know more about the insurance stuff....

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Unread 02-11-2007, 07:38 PM   #3
agonyannie
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it is used in Europe successfully to induce comas to treat everything from drug detox to depression. But not here. Javelin Pharmaceuticals just got an expedited INDA (Investigational drug application) for ketamine for use in pain--but that is years off. Insurance companies hide under experimental use...they know once one company pays for therapy; they will have to follow suit--so they all try to stick together to "stick" it to us.
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Unread 02-11-2007, 08:04 PM   #4
frogga
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Hi Annie

I am English and I use ketamine for pain relief - i have been lucky to have an adventurous PM doctor. He is usally VERY anti prescribing it - only 2 patients on his list have been treated with it - although it is starting to be used more in terminal patients.

I think I am one of 3 RSD patients that are treated with ketamine here. I take it a couple of times a day as a normal med and it has helped.

Wish that PM drs were better at prescribing it!!!!

Welcome!!

Rosie xxxxx
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Unread 02-11-2007, 09:29 PM   #5
InHisHands
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Rosie, just wondering how you take ketamine several times a day? IV?

Welcome, Annie.
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Unread 02-12-2007, 07:40 AM   #6
frogga
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Hey IHH

LOL - you guys haven't got the hang of the whole UK med system here..... no way would it be IV!!!!

It's oral - so it's pretty easy - just take a syringe full 3 times a day...

Rxxxxxxxx
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Unread 02-12-2007, 08:53 AM   #7
LisaM
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Quote:
Originally Posted by agonyannie View Post
Why do so few physicians know about this disease? And how do you prove you even have it since pain is "psychological." thanks
Ah, Annie! Physicians DO know about this disease, and pain isn't "psychological." It's getting a doctor to actually diagnose and treat the disease which proves to be difficult. We had this discussion not long ago, and that seems to be the general consensus. Many of us have been to doctor after doctor, but it seems that once one finally has the guts to say, "Yep, this is what you have!" then FINALLY the other doctors will fall in line and agree. It's just that nobody wants to actually come out and be the one to say it.

As for pain being "psychological" - PART of pain "can be." But ALL pain isn't. For example, we all know that stress "can" make pain worse. And the reason for that is because when we feel icky inside, we feel ickier outside. Our mental health "can" affect our physical health. Just like stress can make you sick, stress can also make you hurt more when you have rsd. However, not ALL of your pain is considered "psychological" and if your doctor is telling you that, then you need to find a different doctor...because your doctor "could be" part of your problem. If he doesn't believe you, doesn't believe how bad you hurt, and that it's real pain, then of course you're going to feel worse "psychologically" which will, in turn, make you feel worse physically. We all have been there, and it's not a nice place to be!

Can you give us a more thorough rundown on what you have done so far? What doctors you have seen (type, etc). And what type of doc you are currently seeing? Do you like your doc? Does he/she believe your pain level?

And why would metlife care whether or not you can go back to work? I don't understand why your insurance company would give a hoot. You're collecting disability, so isn't the ONLY person who should have any say in that be SS?? Why is MetLife sticking their nose in this? Doesn't SS have caseworkers who review your case to see the extent of your disability? If so, then they know better than the insurance company would, right??? Does your dr. say you are totally disabled? Please tell me why the ins. co. would even have a say in your disability so I can understand how it works - cuz one day I will be caught up in this, and I'm soaking all the info up that I can.

I just want to welcome you, and say we do understand, and we've been there, hon. You aren't alone. You found a home where ppl know what you're going thru, and can sympathize with your frustration....very gentle:
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right Side TOS Decompression Surgery 12/2005
RSD Exacerbated after surgery
Still have TOS on left side
RSD On right side, currently in hand, forearm (underside), shoulder, chest, to hollow of throat, and in left hand creeping up into left wrist
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