The first few years I had RSD I took Vicodine as needed and was not dependent on it. It wasn't strong enough to help that much in the dosage prescribed, so I didn't need to ever worry about withdrawals.

I'm now on much stronger dosages of opiates and I am dependent. When I've had issues getting my meds filled, and started experiencing withdrawals, I fealty with spread beginning in new areas. SO NOT FUN.

You may or may not be dependent. You'll feel it once you start to withdraw if you are, and then you just need to reduce more slowly. A runny nose is often my first clue...

I read somewhere that it was contraindicated for RSD. I think I saved the page. I'll see if I can find it. From what I remember it was something along the lines of the pain receptors it effects in the brain makes it not as effective. I brought it up to my doctor and he agreed.

Although why he would keep me on it all this time I have no idea. I originally was on it after my surgery in September 2011 and stayed on it until a surgery in January 2012. My RSD dx was in June 2012 I think.

I think it helps to a small degree, but I have been on it for so long I think my body is to used to it. Before I was taking the Lortab I was taking Vicodin ES...so basically the same thing for a handful of months before my surgery.

I brought up medical marijuana to my doctor a few appointments back, because I am concerned about the damage to my organs. I also have RA and take daily medication for that as well. He didn't seem to think it would help at all. He obviously is not a medical marijuana supporter. It is legal here if you have your card.

I want to try something else, but he wanted me to be off the Lortab first. He said the Lortab could be exasperating the RSD and making it worse. No idea why that is. My next appointment is a few weeks away, then he should give me something else. I think he keeps hoping to come up with a drug combination that works so well I don't need pain meds. Which I won't let happen....I don't want to have nothing if I am having a horrible pain day or stretch of bad days. I'd love to not be taking pain medication all day every day, but I'm also not going to suffer more than I have to.

I have cut down a little a pill or 2 a day. I am going to continue doing it that way I think.


I am trying to be a better advocate for myself and learn as much as I can about RSD, which is how I found this forum. In the few months after my dx I didn't really know anything and IMO that is not a good way to help yourself.

Fbodgrl

The key thing you said was that you need to learn up and be a good advocate for yourself. I think that is the first thing they should tell every person diagnosed with CRPS at the point of diagnosis. Nobody else will do it for you.

One piece of advice though, is to try and look at clinical research papers, published medical case studies and so on rather than just relying on sources like message boards. Nothing destroys your credibility more with many doctors than going in and telling them you found something that was posted on a message board! If you can use ideas on here to go and reference good quality medical sources it lets them know that you are doing your research from reliable sources, you are serious about your condition and treatment and you won't be a push-over! The leading US CRPS charity, RSDSA, has an excellent website with a big library of resource materials including copies of some clinical study papers which are credible and pretty easy to read. The references and footnotes are essential reading - they will point you to other published papers and material.

I can understand that the medication you have been taking may not be considered terribly effective for CRPS so, like you said before, when you are also aware that its not doing much for you, it makes sense to bin it and try something else. That's not the same as contraindicated though - just in case other people were concerned. Contraindicated means that its shouldn't be given because its harmful or dangerous rather than just not very effective. It might have worried other people when you said that. There is also plenty of evidence that these types of drug can actually cause pain instead of relieving it. Opioid induced pain has been studied quite a lot and people who have it usually don't know until they stop their medication and to their surprise, find that their pain levels actually reduce after they stop.

There are many other opioid type medications you could try once you have managed to stop taking your current drug. I have certainly had success with a couple of powerful opioids over the past 5 years but settled on one just over 4 years ago and have stuck with it since then. Your specialist may be trying to manage your pain without including an opioid or narcotic in the mix so you need to see what he has in mind for you.

I think if you can set your expectations sensibly, opioids can be very effective as part of the mix. The big mistake is to think you will be pain free with this magic pill. If you have that expectation it is inevitable that you will keep increasing the dose, develop a tolerance and then try one drug after another, always being disappointed. For most people the best these drugs will do is take away some of the pain. Don't expect it to all go away. Its then up to you to decide whether it is worth it by balancing how much relief you get versus the bearability of the side effects. If you are sensible about it, you can probably continue to obtain pain relief long term without increasing the dose or regularly changing the medication.

As always, just my personal view but good luck stopping the medication.

I have other medical conditions, so I know how important it is to be your own advocate... which is why I have been learning as much as I can.

I'm not using this as my only outlet for learning. I am here more for support, suggestions and understanding from others in my situation. I have researched on the site you mentioned as well as rsddrx.com and several other sites.

Contraindicated can also mean undesirable for treatment I apologize if I caused anyone undo concern.

I have no delusions that I will ever be pain free or any pill will fix the RSD. I have come to terms with that a while ago! I do however want to feel the best I can while doing the least damage to my organs!

My daily dosage is down to half of what I was taking. By the time I see my PMD I will be off it entirely. I am willing to try different medications that are not pain relievers to manage the RSD as long as the pain is managed. I plan to always have a pain reliever to take if necessary. I am also going to try medical marijuana at some point to see if it helps. I have read mixed reviews on it helping RSD pain.

It makes sense to try and keep vital organs in decent shape for as long as possible - that's a complication you can do without!

Its possible you may find the opioid/narcotic drugs (which is what you mean when you say pain relievers, right?) are more effective for the pain if you take them continuously rather than ad hoc. The ones that are delivered through the skin by means of a patch can be easier to live with (plus you don't need to remember to take them every day).

There was a press release just last week or the week before about a reasonably interesting study done in Oxford, UK looking at the mechanisms of how THC/cannabis is believed to work to manage pain. I don't have a reference and I suspect only the abstract would be available free of charge anyway but it was widely reported on The BBC news website and some of the major newspapers in the UK if you are interested in searching for it. I'm sure that would take you to the official published abstract or full text. Everything I've read has tallied with your findings, namely that it seems to have pretty mixed results for CRPS.