I have to come down with Pete on this on. When the constricting and "bone crunching" pain kicks in my feet, only a combination of Xanax and OxyContin/oxycodone makes the pain bearable.

That of course is not to say that Physical Therapy hasn't recently done wonders for my spasms, concentrating almost exclusively on repeating an almost hour long set of "nerve gliding" exercises, for which I had been previously dependant on Baclofen (which wasn’t enough) and on my worst days, Marinol, which took care of the cramping nicely but left me too looped for my taste. And a home ultrasound machine which can be purchased on-line for about $110 really helps as well, for about half an hour. That and mindfulness can allow me to side-step the pain, but I'm not (yet?) at the point when I can do that while chewing gum and walking, so to speak. For reasons that should be obvious, a peaceful environment helps a great deal in maintaining the level of concentration that’s required for that one.

Sure, it’s possible to go into hyperaesthesia from narcotics, and it happened to one of the dearest friends in my life, after over 30 years of intractable pain, a dozen failed back surgeries and an implanted morphine pump that almost killed her (discharging a 30 day supply in 36 hours), when she finally developed metastasized ovarian cancer, and faced the worst pain of her life, she was given a Dilaudid pump! And that put her over the top. She was in fact more comfortable once she was detoxed, and more comfortable still when she was put back on a reduced level of opioids, where she spent the final months of her life.

And yes, I know that some of the old guard, along with the University of Washington Medical School - which has basically hijacked the state with the odious new law that will take effect in the middle of next year – are constantly bleating about people developing “tolerances” on account of which they require ever increasing amounts of the medication, just to stay in one place. And perhaps that was true of my friend, but if so it was only because her doctors were cowboys, ever willing to push her into something stronger, and she was compliant. Of course, nowadays too many doctors rightly live in fear of the DEA, which is why I would guess that KyMarie’s doctor told her the narcotics don’t help with RSD/CRPS.

Of course it’s rubbish, everyone would agree that they help – at least in the short run – but I suspect what she heard was spoken less out of conviction then self-preservation. And sadly, this is largely a regional phenomenon, especially in the Southeast, where doctors and at least one patient have been put away for what many would assert was objectively reasonable conduct. Whereas, to come to the attention if the DEA in California, you must either run a good size marijuana plantation, be prescribing and dispensing thousands of doses to any given new cash patient in a single office visit [true story] or be responsible for the death of a celebrity, or so at least so it appears.

In my case, my doctors have been much more cautious. I must have graduated from Vicodin to oxycodone six or seven years ago, but I can truthfully say that my consumption of OxyContin and oxycodone has remained unchanged to the last four or five years, except for a disastrous month in with my pain specialist tried me out on Methadone and I couldn’t keep my eyes open. Perhaps I’m just genetically lucky in that regard, especially where two of my first cousins were heroin addicts who died of AIDS in the 90s. And yes, if I haven’t taken the meds for a while, I can become agitated for a few hours, but that’s what Klonopin is for. And when I go to a weeklong mediation retreat, I’m off them almost the entire time: sometimes the pain is bad enough by dinner time that I feel I “have to” take a single 5 mg. oxycodone, but then I wind up sleeping through the dharma talk!

So do narcotics ease the pain of RSD/CRPS? Yes, without a doubt. But neither are they the be-all-end-all. But they can make a huge difference in the meantime.

KyMarie, I apologize for going on so, and hope my comments are useful.

Mike

Mike,

So sorry to here about your friend. What a sad sorry.

Happy Thanksgiving.

gabbycakes

I have been on so many mixes of meds of opiates narcotics ect.

the only thing that seems to work on the burning pain is the Fentanyl patch and low does of Methadone. Drs dont feel what we feel, you have to find whats right for you. There are so many additional problems that go with this disorder that its not just about the pain as we all know. I have been fighting this for 5 years with just getting diagnosed 6 months ago. I am mostly bed ridden and just happy to be able to sit here in bed without being in throws of pain.
Lori

It is my understanding that morphine (Fentanyl) and methadone don't go together. You are supposed to take either one or the other, but not both together. Because you are using them the way you are, you are not getting the full effects of the meds. Dr. Getson taught me that because I was doing the same thing that you are doing now and didn't know any better.

I tend to agree with Gabby about narcotics. The more I took, the more I needed. At one point I was up to 100 mcg of Fentanyl. And I weighed the least I have since I was in high school. All I did was cry when I wasn't sleeping - the meds made me miserable and sleepy. It's a good thing I have a dog that required a few walks during the day and several friends in my neighborhood that I routinely walk with - otherwise I could have easily spent close to 24 hours a day in bed. The meds were really a downer. It wasn't until I went off of them that I realized how wonderful it felt not to be on them anymore. I needed Suboxone to get off the Fentanyl.

Good luck to you. XOXOX Sandy

So it seems that some of us have had stable and generally favorable experiences with opioids and/or narcotics, while others have not.

Hopefully, we are not too far away from the time when smaller doses of opioids/narcotics will be able to be “potentiated” with precisely titrated micro-doses of “mu-opioid receptor blockers,” such as Naloxone, which should alleviate many of the negative side effects of currently available medications, with the hope being that the time is not that far removed that drugs will be available that produce only a pure analgesic effect. (Trust me, a great deal of money is currently being invested in the race to get that one right.)

But in the meantime, a couple of questions:

Can we simply agree that individuals have different reactions to opioids/narcotics, and in the absence of some to-be-developed genetic testing or a personal or family history of narcotic addiction, it is difficult to predict how well anyone will fare with them over time?

Second question, and getting back to what the doctor told KyMarie, has anyone ever had pain from CRPS that has not been temporarily relieved by a sufficiently high dose of opioids/narcotics? (Whether or not you ultimately developed a tolerance.) And the list of medications would include, for the sake of argument, those as powerful as Methadone, morphine sulfate, hydromorphone (Dilaudid) and oxymorphone (Opana).

I agree with a lot of you that everyone with RSD is different. Just look at all the different classes of medications we are all on.
I've only been on one narcotic which is Methadone. All I know is that my pain skyrocketed on Methadone. In fact my left foot has never been the same since then and it has been about 9 months. My Neurologist had no idea why that happened and could offer no explanation. Since that episode I've been too nervous to try another narcotic.

Lori,

Do you and your doc understand that Methadone will negate (some of) the effects of the Fentanyl ?

KyMarie,

I think your doctor is an idiot or severely opiod phobic.

I could understand if he said he didn't think opiods were the optimal treatment, or talked about rebound pain, or that opiods are often not as effective with nerve pain, but to say they just don't work on RSD is just plain ignorant.

Different solutions work for each of us. I can certainly understand a doctor prefering if we can manage on a combo of the right exercise, relaxation, topical treatments. Neurontin/Lyrica, antidepressants like Cymbalta or Elavil, muscle relaxers, etc. I think as patients, we have the responsibility to try to incorporate other treatments before relying on just opiods, but for some of us, opiods are also a necessary part of the mix if we are going to be able to enjoy life at all.

The blanket statement that opiods just don't work says he doesn't understand nerve pain or just is not willing to try prescribing them.

Thank you all for your words of support and your advice....

I just had a tooth pulled about 2 months ago in which became infected, my dentist prescribed me Hydrocodone 5/500's...for 5 days (he gave me 20 pills), I was able to do things I haven't been able to do since my accident now 3 years ago (I just "celebrated" my 3rd anniversary on the 12th). Just taking them for the tooth pain, helped my knee.....I was happy while they lasted, ever hopeful that mentioning this to my PM doctor would help her see, they help me.

I saw her Monday and didn't even get a chance to mention it. I've been having back pain for months and after a visit with her nurse practitioner in November while my primary PM was on leave, they have switched their course from my knee to why is her back bothering her now? Or maybe they just think they've done all they can for that aspect, heck if I know. Thankfully, I see her to try SI injections (add SI joint arthritis to my growing medical problems) the 23rd so I'm hopeful I'll be able to mention it to her then or shortly thereafter....however, she was unhappy when I told her I had information from RSDS's website that tells me the study that says narcotics do not work for RSD/CRPS patient's was poorly conducted and really shouldn't have much credibility. She had nothing to say to me about that and just looked away fairly guilty. But we'll see what she says when I get the chance to actually tell her about the hydrocodone that worked....

I don't want to be drugged up...I just want some of my life back when the pain is just too much for my cocktail to handle. But, I guess I'm asking for too much right now.

You guys seem to know your stuff when it comes to bad pain flares, so I'm hoping with your shared experiences you can help me.

Quick back story: I was dx w/rsd in foot about two weeks ago (which had began to spread up leg by the day I was dx, and to the other leg by the next day- pointed out to me by the neurologist who perfomed my EMG) all from bunionectomy done about eight weeks ago.

Anyway, I'm taking Topamax and Neurontin, and Vicodin for pain. The Topamax and Neurontin seems to be helping with some of the severe sensitivity to touch, and the burning pain is reduced. However, the last few days have been absolutely terrible, and every day gets doubly worse- the shotting pain, and the throbbing... it's unbearable. Where just a week ago I would wake up and a half a vicodin would last me till late afternoon, (then nighttime was the only really "rough time"), now it's brutal all day *and* all night. I'm wondering if it's at all normal for this to happen (during the onset of the disease, or at all)- for the pain to increase so rapidly, to the point that the current pain pills barely make a dent (albeit, Vicodin seems to be a fairly week one, in the scheme of things- compared to what I've read most others are on in times like this)

In the meantime, does anyone know of any other options for pain relief in times like this? (idk if you'd call it a "flare" per se... my dr says that I'm in the "acute" phase of the disease...so i'm thinking that means mega-flare, all the time?! I'm currently taking Vicodin 7.5, every 4-6 hours- used to be just a couple a day, but with this surge of pain, I'm at every 4hrs on the dot, not that it does much! I sometimes have to take 1.5 for it to work at all (doc knows, is okay w/this), but it tears up my stomach, and still doesn't do the trick. So obviously, all these pills are doing a number on my tummy, although I've been careful- taking them w/food, and even eating an activia every day- (that does help, must say, keeps things "moving"). Obviously, because of my sensitive stomach, I'm limited as to other options for pain relief as well- anything with aspirin or naproxen (Aleve) in it will send me to the ER w/stomach bleeds

So I'm wondering if there is anything that is longer-acting, and a bit stronger than vicodin that I could look into, and that is ideally not in pill form. I need something that will help at least make a bigger dent in the pain, but will last longer, so I'm not stuffing myself with so many pills all day long. I know a lot of people swear by fentynal patches during the really rough times, but I'm afraid that might be too much, unless they make them in low-dose versions? And as I haven't been sent to a pain specialist, I'm afraid to ask my neurologist for something like that- I'm not convinced he really understands the amount of pain I'm in, and even bringing it up might cause a serious misunderstanding- (red flags, so-to-speak) that I'm just "seeking drugs". I am seeking something though...relief!

Bottom line: my stomach just can't handle the pills anymore, but my soul can't handle the pain any longer either... I feel completely hopeless at this point.



As always, thanks for listening, and thanks in advance for your help. I hope this finds you pain-free and hope-full!