Not to be ornery, but everyone is truly different.
I went 7 years with no diagnoses, then it quickly went full body. Along with TOS, four herniations, TBI, and a few other 'delights', I've been on this train for more than 27 years.

I've been put on Methadone about 20 years ago, and was told to think of it like (BP medication), I'll probably be on it for life. (Before that, I was on other lesser 'strong' meds, that made me feel 'buzzy' and foggy. Not good!

Over the years, and with the 2nd accident, my dose has changed, but, I'm now at half the highest point. I do take a 'cocktail' with Cymbalta, diazepam, zanaflex(at bedtime), and migraine meds.
For me, Methadone is the ONLY thing that has ever controlled 'The Burn'.
I was raising two children, and running two business'.
I hadto have relief! And, even with methadone, I still needed breaks during the day..

I suppose it depends on your own body, what you need to do, and how often you can just sit still, along with the severity of the injury. We all react differently.

Just so long as your life is liveable, and the pain doesn't drive you into depression, I say OK! God Bless All!

Be Well,

Pete
asb

I've only tried a few of the narcotics but they don't really work for me. Large doses of morphine just make me not care about the pain but it isn't really diminished. Methadone does something (not sure what) (it sort of sets the pain aside) but it doesn't act as a pain killer until the next day when it wears off. I'm very sensitive to it. The others seem to have no effect or they just make me giddy or stoned (I don't like them).

Gabapentin helps significantly but it doesn't help the pain it just stops it from starting in the first place. Luckily tramadol does give me a little relief. I can even feel it kick in. It's only about 40% relief but the feeling of power over this is priceless and very pain alieving.

Mostly I just need to avoid triggers if I want to not have the pain.

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).

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.

Well I wanted to share my opinion. I could not survive without them
My pain is just too severve. However. I do believe that the breakthrogh meds do cause a flare up every 4- 6 hours. I do believe they can cause wind up.
Actually increase pain for a period each day. several tiems a day actually.
Having said that my pain with out them is so severe i have no choice but to endure it.
Dr. Schwartzman does not support the use of high doses as it interfers with the bodys ability to recieve the benifts of ketamine therapy. I believe i am quoting him correctly. I do know that is true.
Having had exensive ketamne therapy I know it lowers my pain threshhold considerably and therefor the need for such high doses of morphine and oxycontin for breakthough. actually right now I just switched i am on opana er and opana immediate release. so far the opana ir is just giving me horrible migranes and very litlte pain relief but i am only on the second day.I really want to get back to philly for more ketamine infusions but money is now a problem. I had infusions for 5 years. and the coma. I wish i had never stopped.
If anyone else is taking the immediate release opana would you please let me know if it is helping, Mine is 10mg dx every 4-6 hours up to 5 per day. I have not taken over 3 due to migraine. thank you so much cz