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 11-02-2010, 03:37 AM #31
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thanks swatgen. i'm sorry i intruded on this thread because i have MS not SD or CRPS (as far as i know). i was just lookign for a thread that discussed the painkillers and did not notice it was in a different forum. anyway, your advice an dhelp is mucho appreciated!
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Old 11-02-2010, 07:38 AM #32
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Before i was diagnosed with RSD which was 4 months ago...I was taking 120mgrs of Oxycontin a day and 60mgrs of percocett. I still had the burning pain and it really didnt work well. Then i changed doctors and am on he Fentanyl patch and Methadone. Now i dont have the burning feeling and am not in pain when sitting still, but when i go to move then i feel different pains.
Im just happy to be out of pain sitting still which is something i never had with the opiates for the 5 years that i took them.
Lori







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I avoided opiods for three years because I'm a recovering alcoholic with 11 years sober. When I was finally diagnosed correctly with RSD and met a competent and compassionate pain mgt doctor he assured me the clinic would monitor me closely. I was at the end of my rope with the pain and it affected every part of my life for the worse. After seven years the RSD has not improved. Every couple years I have had to increase the opiods. At one point I was on a daily dose of 90 mg of Avinza (time released morphine) and four 5/325 norco. I wanted to try and reduce the Avinza in favor or more norco for break through pain. Two years ago I cut down to 60 mg. and increased the norco to five a day. Now the pain is worse with the cooler weather here in the midwest and I'm going to ask my doctor to consider putting me on 7.5/325 norco and stay with five a day. I know better than to tell my doctor this but I currently run out of the norco in about three weeks and get refills every four. I have to hold back a few days supply to take before my appointment because everyone at the clinic is urine tested for what they are supposed to be taking and not taking. I've been keeping a pain diary for the past two months which I find helpful in sharing with my doctor when trying to change my meds. I also recently posted asking for advice from anyone who has experience with Soma. We have to be our own best advocate and a forum like this is helpful. The difference between addiction and physical dependence in the relief of severe chronic pain is well understood by people in our postition. Keep up the good fight.
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Old 01-22-2011, 09:42 PM #33
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Default Medtronics best pumps?

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I got my first morphine pump 7 1/2 years ago. It lasted 5 1/2 years before the battery finally knocked out. I then had to go a bit over three months without one because of more surgeries I had to take care of first so I was reminded what life was like without this fantastic little machine - and I'll tell you I was in pure hell. After we installed my second morphine pump 1 1/2 years ago, I once again was reminded just how unbelievable of device these things really are, but there are problems that go with them - so you've got to accept the bad with the good.

First the test is an overnight stay in the hospital where they'll inject morphine directly in your spinal fluid. The pain went away and I bawled in tears it felt so good. 4 hours later it burned off. You'll know on the spot of this will work. If the pain either considerably eases up or goes away, it should work. If the pain is still there, then it wont. The worse story I read on this very site was about a person who was complaining about their pump not working even though they'd lied to the doctor during the test about the pain going away even though it hadn't during the test. For this person, their lie is going to make a heap of future problems and I'm glad I'm not in their shoes. Meanwhile, I just can't fully describe how much of a difference it's made in my life.

After doing my morphine pump test we installed my 20 grand pump the following week that ran around $1,500 per refill every 8 to 9 weeks during the early years (I haven't kept up so I know it's more expensive now). When we installed my 2nd pump last year the cost was 30 grand so this is no cheap up front investment. In addition there was a huge lump on my spine where the catheter (a tube is placed from the pump that sits in a pocket in front of your tummy through the middle of your body) is sewn into place that took over 6 months before the swelling was small enough to not really bug the heck out of me all the time though it still does and can get very sore to this day. Then there's the hockey puck sized device you have to carry around inside your tummy that's another tad annoying byproduct. This thing isn't small no matter what Medtronics web site says, and so bending over is a much greater challenge not to mention the fact that my waist size went up over 4 inches thus all my clothes were either worthless or didn't fit right. There is no silver bullet. On a positive note, my second pump has a much larger reservoir so I don't have to go in near as often to get it refilled.

Morphine pumps can help but I'd say their main purpose it to moderate out pain throughout the day. This type of expensive technology is handed out to only the worse cases and all of the physical damage and documentation must be perfect or it will never get through the insurance companies or Medicare. Just warning you up front since I've see others who have had problems though mine was approved in less than a week.

It is an option worth exploring, but it comes with other prices. Would I live without one, heck no! Am I terrified with all the changes in insurance that I won't be able to get one next time my battery dies, you're darn right. Am I thankful each and every day for this annoying gadget that's constantly in my way but that gives pain relief like none other, more than you'll ever know.

Talk it over with your doctor and see if this is a test worth taking and then go from there. Always be honest at each step along the way good or bad. It's my opinion that more people suffer from bad relationships with their pain management doctors because of not always being 100% up front than for any other reason. Your strength of character and reputation will go a long ways toward earning the right to have this option given I assure you.

Best of luck and if I can be of any more help let me know, Bob.
Hi - I am trying to assist my father in the process of being set up with a pain pump. What is the best one to get. He mentioned the medtronic 40. Also, they are going to start him off with dilaudid and lidocaine. He said that the trial gave him some relief, but not complete. Should he ask to try different medications before just using what they have tested. And, I think they just did some injections for the test. Do you think they might be more accurate in determining the dosage if they do a continuous test with higher and higher dose until he is not in pain?
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Old 01-23-2011, 09:38 AM #34
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Default The extra testing is not needed at this stage

Once the doctor decides to put in the pump that's your first hurdle and a major implant plus healing experience. There's nothing easy about getting one of these things or getting use to it.

After the pump is installed, let the doctor start down his conservative list of whatever he decides to use as far as dosage and pain medication. You don't start out at the top end, but instead work your way up till you find the safe and correct dosage. Because we're talking about some pretty heavy duty drugs, there must be extreme caution used when the doctor is ramping up the dosage and when choosing which pain medication he'll respond too best. This could and will take months, but I assure you that no matter where the doctor starts at, your dad will be in better shape than he is now as long as the test proved that this would work for him.

The worse case I ever read was about a person who was unhappy with their pump after it was installed since it wasn't helping with the pain. The reason was because the patient had lied to the doctor during the test and had told him that it had worked when it really hadn't one bit. When it comes to pain management, it's just as much about our relationship and trust with the doctor that matters here as the actual medication(s) we eventually use. Also make sure your dad understands that just because you have a pump does not mean he'll instantly be pain free. I'm still taking two kinds of oral narcotics in addition to the pump so when we're talking about this level of pain, there are times when all of us climb the walls even with the huge load of medications we're on. All my best for you and your dad.

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Hi - I am trying to assist my father in the process of being set up with a pain pump. What is the best one to get. He mentioned the medtronic 40. Also, they are going to start him off with dilaudid and lidocaine. He said that the trial gave him some relief, but not complete. Should he ask to try different medications before just using what they have tested. And, I think they just did some injections for the test. Do you think they might be more accurate in determining the dosage if they do a continuous test with higher and higher dose until he is not in pain?
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Old 02-15-2011, 08:48 PM #35
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Smirk Yeap

Methadone & Percocet 4 me! Walk around drunk but better than sleeping all day w/ oxycontin 20mg x 3.
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Old 02-16-2011, 12:51 PM #36
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Originally Posted by lorigood243 View Post
Before i was diagnosed with RSD which was 4 months ago...I was taking 120mgrs of Oxycontin a day and 60mgrs of percocett. I still had the burning pain and it really didnt work well. Then i changed doctors and am on he Fentanyl patch and Methadone. Now i dont have the burning feeling and am not in pain when sitting still, but when i go to move then i feel different pains.
Im just happy to be out of pain sitting still which is something i never had with the opiates for the 5 years that i took them.
Lori
Lori, isn't Fentanyl an opiate?
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Old 02-17-2011, 04:19 AM #37
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Lori, isn't Fentanyl an opiate?

Fentanyl is a powerful synthetic opiate analgesic similar to but more potent than morphine.

http://www.nida.nih.gov/drugpages/fentanyl.html
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Old 02-17-2011, 01:07 PM #38
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Fentanyl is a powerful synthetic opiate analgesic similar to but more potent than morphine.

http://www.nida.nih.gov/drugpages/fentanyl.html
Koala, my wife has RSD. In the past she has worn patches of some kind (not Fentanyl) and that the patch itself hurt her and caused her skin to break out. Does Fentanyl come in another form?

Thanks
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Old 02-17-2011, 03:51 PM #39
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Does Fentanyl come in another form?...
Fentanyl comes in injection form, as a skin patch, an effervescent tab (like the Actiq lollipop), and a mouth spray with other delivery methods currently in development. http://en.wikipedia.org/wiki/Fentanyl

The Fentanyl patch is also known as: Actiq, Durogesic, Duragesic, Fentora, Onsolis, Instanyl, and Abstral.

If those names are not familiar, maybe the patch you used was Norspan (buprenorphine)? Norspan is not the same as Fentanyl, but often used as a first choice pain reliver because it doesn't fall under the category of opiates.

There may be other brands of skin patch that I'm unaware of. Also, I'm in Australia not America, and our medications often differ from your's, but should you post a question in the Medication Forum, I'm sure mrsD would be happy to answer it for you.
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Old 02-17-2011, 04:08 PM #40
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Thanks for the info Koala. I have family in Sydney. I've never met them but spoken to them many times over the years. They are the children of my grandfather's older sister. Australia is a country I've been wanting to visit for decades. My wife is not able to travel those distances so its a little hard to plan for it. Thanks again
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