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Reflex Sympathetic Dystrophy (RSD) (CRPS) Message Board

Reflex Sympathetic Dystrophy (RSD) (CRPS) Board Index

Re: Not good news
Jun 13, 2008
[QUOTE=RoseinSanDiego;3608135] He also offered me narco, narko, norko -- Don't know how to spell it, but I know it's a bit stronger than Vicodin cuz that's what I'm taking now -- I'm doubling up on my Vicodin instead of having to buy the Narco (sp?????) Anyways, -- Anyone on that Narko drug? Do you like it, does it help, does it make you light headed?[/quote]

Norco is vicodin. It can be confusing because for each mg it goes by a different name. Vicodin usually refers to the 5mg pill. Lortab is the 7.5mg pill and Norco is the 10mg pill. I took the lortab for the past 2 years and 4 months before upping to the 10mg Norco, generic of course. It is helping the pain more after my body adjusted to the 7.5mg. I'm so very glad that my body is slow to get used to meds. The biggest surprise was the price. I was paying $52 a month for the 7.5mg and I'm now paying $38 for the 10mg! Talk about awesome! LOL

I can't speak to the working thing. My rsd spread very fast, 11 month to go full body, and I haven't been able to work since it began 5 1/2 years ago.

[quote]And, who has been helped by the sympathetic blocks? I know some are helped, many are not. Also, he explained to me that IF it helps, then we will just continue doing that -- He said that in his research, the patient went 3 months before needing another one but I've read on this site that sometimes it only gives relief like for a day, etc -- Not worth having the procedure. Also, I'm a bit nervous because it's invasive and I surely don't want RSD in my back and that thought scares me to death. Can anyone help with this? I know RSD is the weirdest syndrome in the world cuz no 2 people have the same pain level, the same problems, etc etc. I burn a bit in both feet, but I have zero sensitivity and I'm 9 months with RSD. Someone on this site had said they didn't get sensitivity until 4 years so I know we're all very different except that we all hurt an awful lot.[/quote]

A lot of people get blocks. It's something that it won't hurt to have done. So far I haven't heard of anyone who had rsd spread because of a sympathetic block. I would not let a doc do them if he/she did not use flouroscopy, which is a fancy word for live x-ray. This enables the doc to make sure he puts it in the proper place. As you pointed out quite well, no two people have rsd the same and so it would be worth getting the block(s) because it just may take away the pain for days. It usually takes more than one block to get even more relief. Basically, when you get the first block and you get pain relief for just a few hours, then you may or may not get any more and more likely less relief from a 2nd block. If you get a few days or even a week of relief then you'll most likely get even longer relief from a 2nd block and more from a 3rd.

[quote]He also had mentioned the ketamine in-patient thing is an option for some. Oh my gosh, I almost died in shock but my doc is a good RSD specialist that was just telling me all the options out there possible for down the road, if necessary. I didn't ask him if the hospital he's affiliated with does that procedure but wow oh wow -- Being in an induced coma for 5 days???? YEEKS! I thought I read or heard somewhere that the young gal had done it but it only lasted a year -- Her RSD came back -- Is that correct?
Michelle, I know you've written back with some wonderful, kind info and I'm pretty sure you've had RSD for a very long time. I can't remember -- Can you walk on your own? Are you mostly in bed all day? I'm so sorry, I honestly cannot remember. Thought maybe you could help answer all these questions.
I also need a cortisone shot in my right thumb because I've got an unrelated ligament problem and I don't even want to have that because I'm soooo afraid that RSD will go there too because of the needle. Isn't that right?
I know there's tons of questions here, but I would so much appreciated it if someone could answer some if not all of my questions.
Guess that's it for now -- It's a Friday night and my husband and I are gonna watch a DVD so must go for now -- You all take good care, and we'll write soon.
Thanks again for writing.
Rose :angel:[/QUOTE]

As to the ketamine coma, it's not legal in the US to do it. In order to do the coma you have to go to Germany or Mexico, in order to get to that point you have to go through Schwartzman (sp?) or Kirkpatrick. Dr S takes care of the Germany study and Dr K the Mexico one. BUT you have to be really, really bad off in order to qualify at all. The ones who have gone into the studies to get the coma were that bad and worse, and had tried every treatment out there and then some as well as being maxed out on meds and had no other options left open to them at all.

The only "ketamine treatment" that is legal in the US is a ketamine infusion. A Dr Harbut in arkansas does them and Dr S does them. It's like a 4 day infusion I believe and at no time are you ever out of it. The coma has helped the ones I've seen get it but it definitely isn't a cure. The infusion has helped lots more people and they've gotten significant relief from it for long periods of time. Insurance will not pay for it though because they don't recognize it as a valid treatment option, sort of like hbot.

I wonder at your doc even bringing something like that up to you though seeing as it's only in your one leg. That's an option that I truly wish you never have to consider. To mention it at this early stage to you...well, it's left me scratching my head a bit. Seems a bit premature to mention it at all.

As for the cortisone shot in your should be just fine to get it done. I can't imagine that a shot would have the rsd jump from your foot/leg to your hand. RSD jumping rarely happens and I personally have never heard of spread like that from a shot. It should be perfectly safe to get done. Now needles or surgery on an rsd limb isn't a good idea, which you already know. There are ways to have surgery and not have spread from it. The "rule" is usually no surgery at all UNLESS it's absolutely necessary. I've read of a lot of people needing surgery with rsd and they didn't have any spread from it at all.

*phew* LOLOLOL I think I covered everything that I have knowledge of. Ask as many questions as you need and want to. It's the only way to learn and get informed of this totally confusing stuff we call rsd.

Big Hugs,

Re: Not good news
Jun 18, 2008
Hi Michelle,
Lidocaine infusion sounds like it's helped you a ton -- I'm unfamiliar, but I'll ask my doc about them. He's really into the research of RSD. Told me the future is probably headed in the area of ketamine infusions. So, are you able to walk since the lidocaine? You mentioned you were in a better place since you got those infusions, but wasn't quite sure what you meant. Less pain, more able to walk, etc, I just wasn't sure. I saw my doc yesterday and he raised my lyrica just a bit, from 600-750 and I hope to go 1 month without having to see him. As I posted already, these meds have put on a ton of weight -- Anybody else out there have this problem? oh my gosh, I began this journey in a size 10, now I'm in a 16. That's a huge difference! I just wanna make sure I'm not the only 1 with the weight gain. Plus, it does a number on my brain -- Very strange medications I tell ya. I feel like I'm in na-na land most of the time but I've always been able to drive and stuff so I shouldn't complain I guess.
Hope you're doing ok, and I hope you're not in too much pain. Thanks so much for your response. I soo appreciate everyone who writes on these boards. I feel connected, and sometimes my day is so scary, so burning and I always come to these boards to help me feel less all alone.
Take care, Rose

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