[KyMarie]

My doctor tells me that Opiods and Narcotic pain medications don't help with RSD/CRPS pain....has anyone else heard this from their doctor?

[kathy d]

Hi KyMarie,
Yes, I have heard this from a few doctors that don't really totally understand RSD and the horrible burning nerve pain we have to live with each day. It is very easy for doctors to say "Oh well they don't work" but in fact some work to lessen the pain so it is a bit more bearable to tolerate each day. I know in younger children with RSD they usually try to avoid the opiods and push the physical therapy alot and I can't even imagine a child with the pain I have...my heart breaks for them. I have mostly heard this statment you talk about from doctors that do not want to be bothered with having a patient on longterm opiods. There are sooo many regulations for opiods that the patients that need it like us have a hard time getting it or else they think we are drug addicts (I've been treated like this in the past by one or two doctors whom I reported to their supervisors as being cruel).

Personally, I had my RSD pain come back 1,000 times worse from problems with Ketamine treatments in Sept and had no pain meds at all and I laid in a fetal position crying in agony for days and felt like dying because the burning nerve pain was so severe that I could not move from the bed. Once I began to take a lighter dose of opiods than I used before I felt like I got my life somewhat back and I continue to struggle with pain each day. I know people with RSD are strong because you can't be a wimp and have RSD so if we can get something that will lessen our pain (even 10%) then it is worth it to me not to suffer. It is funny (not really but) we can put people on the moon and in space station, etc... but we can't cure cancer, RSD, or the common cold???? Go figure! One thing I learned in almost 6 years of fighting this disease is that you must be your own advocate and speak up for what you feel is right for you because no one else will do it for you. BEst of luck to you and hang in there.
kathy d

[daniella]

Hi I am on no narcotics or opiates and many of the pain specialists I have seen that are supposed to be well known with RSD such as Dr Stanton Hicks and Dr Carden feel the way you doc does about narcotics. I don't judge anyone who takes them though. Some days my pain is so high I wish I had something to take even an edge off. In the very start of my condition my neurologist rx me these and I used them on a rare occasion but I would say for a year plus have not taken 1. What I feel with this condition is that we all respond to things different and need different types of treatment for relief. I hope you get some relief with what ever treatment path you choose.

[SBOWLING]

Originally Posted by KyMarie

My doctor tells me that Opiods and Narcotic pain medications don't help with RSD/CRPS pain....has anyone else heard this from their doctor?

I have full body RSD/CRPS. In Semptember I had a second disc fusion C5 and C6 I aleady had a fusion at C6 and C7. My pain flaired to awful levels. Ketamine was used after surgery they didn't follow Dr. S recommendation but used what they do at Christ Hospital in Cincinnati OH.

After a week of awful pain I called Dr. S office in Philly. His advice was to increase my neurotin, cymbalta and ativan within 3 days my pain was back to a managable level. Narocitc's are an aggrivator for our pain.

I hope you find relief.

[gramE]

Hello KyMarie
I think I'm as new at this as you are and I try to take as little pain meds as possible. Stopping whatever and resting is the best option. I listen to music, especially with an earbud, find someone to "entertain" me which distracts me, do a puzzle which takes a great deal of focus, anything to distract me. But I do use them as they make my brain mushy when the pain is unbearable, like someone peeling my skin off of my feet. My doc says he doesn't care if it helps the pain, or my perception of the pain, it helps. Learning the limits between what is enough and what is too much is the key. And sometimes for me it doesn't matter, it is gonna flare up.
And Kathy D is right. You have to figure out what is right and what is best and what works for you. I think a muscle relaxer is more helpful than a pain pill.
Keep on trying to find what is best.

[gabbycakes]

Originally Posted by KyMarie

My doctor tells me that Opiods and Narcotic pain medications don't help with RSD/CRPS pain....has anyone else heard this from their doctor?

Hi All,

I wasn't going to comment on this subject again, it has been bounced around in different ways many times before. But I do agree the less the better and with SBOWLING AND gramE. But there are logical reasons why long term use of opioids will have the opposite effect eventually. Maybe not tomorrrow, not 6 months but it will with all scientific reasoning happen.

I hate to say my doctor is the best RSD Doctor but I do go to one of the best and we have talked so many times in the past about why and how this all works with opioids. And just so everyone understands I have never had a problem getting medications if I said I was in a flare I got what was needed. But I was really watched and I know thats how he does it with all his patients.

As it has been explained to me in simple terms the body gets used to the pain medication because your pain receptors get dull, don't work properly because the opioids are doing the job plus pain receptors are connected to the brain who then tells us we are still in pain so we take more pill and it's a cycle that can lead to serious problems worse than any pain condition can give us. But sometimes we need to use them for extended periods because we are dealing with surgeries, flares, and whatever else comes with having RSD. It took be a long time to get my head wrap around this concept because I just rather stay on the medication it was easier it's much harder to find other modalities to help our pain. But after 7 years of this disorder I honestly do find the less medication the better but this takes time and you have to replace it with whatever works for me it's excercise and I'm not a excercise nut never was. But maybe it's the endurphines that do something but that is the one time I don't feel any pain. It takes me more time then other to do things and I can't do alot of things at the gym but it works.

There is a childrens RSD doctor in PA named Dr. Sherry. When I first felt like I was gettng pain relieve from excercise I started to look around the internet about excercise and RSD and after many searches I came across Dr. Sherry's program and how he uses heavy PT and excercise to reverse the RSD without any meds. The reason this is only done with children is because there body's are less pre-programmed about what pain is all about. He appearently gets great results with his program I know it doesn't work with every child but his percentages are pretty high. I did start to search if there are any facilities trying this on adults and yes there is in Chicago. But from what I here it's very selective on who they take in. The reason for that is that adults are very hard to change and most don't respond. If my life ever settles down I would really love to try and get into that program because I believe there is something connected between PT/excercise and reversing RSD.

I know everyone is saying I can't even walk a block, well I couldn't either. The first day I walked into a gym, which was 4 years ago, they had a trainer help me but I fell right off the treadmill almost hurt myself, was the most out of shape person there, I was so embarressed plus I was hurting. But with the support of my doctor and a trainer which believe me I could not afford at that time, slowly I started to feel the benefits but again it took time. Now I can stay on a eliptical machine for almost 45minutes, I can do certain light weights and my heart rate is great. I'm 49 so the best for me should be about 139 beats per minute. When I started my heart rate was 64 bpm. Do I get lazy and make excuses why I shouldn't go yes, do I still have pain, migraines, pain in my RSD arm, lack of sleep and take opioids when I need them yes. But I am far better off then I was 4 years ago and taking less medication since my nightmare started.

This is just my opinion but from where I was to where I am today is truly amazing, I never thought I would have my life back. This Thanksgiving will be the first holiday I will be cooking,along with my husband, since my accident. I am so excited we'll only be 8 but that's a good number to start with.

Happy Thanksgiving to all...

Gabbycakes

[AintSoBad]

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

[Imahotep]

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.

[fmichael]

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

[gabbycakes]

Originally Posted by fmichael

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