|
Opiods/Narcotics Don't Work???
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? :confused:
|
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 |
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.
|
Quote:
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. |
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. |
Quote:
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 |
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 |
Quote:
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 Quote:
|
a couple of questions
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). |
Yes
I had my PM say that about my burning RSD back pain. She's changed her tune since I developed pelvic pain (guess she doesn't think you can have RSD there?). Told her the pain relief of Percocet was dropping off too soon so now I have Percocet for flares and Oxycontin for everyday. I now have more consistent relief.
|
I'd like to add, that in my 'cocktail', I have no anti-inflammatory.
So, on those 'weather' days, cold and damp, cold and lonesome, low or dropping barometer, whatever, when my usual cocktail doesn't quite do it, I reach for the 'Big Guns'! Yep, one or two Aleve. Really make a difference. I'm allowed by my doc, to take an extra methadone, or zanaflex. But, I find that for me, the Aleve really helps kick them all over the top, and really give me some relief. (Motrin only makes me ill, and Tylenol has no anti-inflammatory relief). For me, Aleve works better than Aspirin and Advil too. But know your anti-inflammatories, even they are worth a discussion with your doc! Be Well All! Pete asb |
Quote:
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. |
Need suggestions!!
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! :hug: |
pain suffer toooo
Quote:
|
please don't overlook sympathetic nerve blocks
SnowWhyte -
Where you were injured only eight weeks ago, it is vital that you immediately get started on an aggressive series of lumbar sympathetic blocks, combined with PT on the days after the block when you have maximum pain relief. But the window on starting this is really short, with the best evidence suggesting that the best chance of blocks making a difference is when you start them within three months on the onset of symptoms. Now, because you've got it in the foot (as do I) the treatment would be a lumbar sympathetic block (LSB), performed under fluoroscopy. However, the same principles apply ;to treating CRPS in the arms, where the "stellate ganglion block" (SGB) is the most frequently applied. And with respect to the SGB research has shown the blocks are effective, if initiated roughly within 22 weeks on the onset of symptoms. See, e.g. Efficacy of stellate ganglion blockade for the management of type 1 complex regional pain syndrome, Ackerman WE, Zhang JM, Southern Med J. 2006 Oct; 99(10): 1084-8, FULL ONLINE TEXT @ http://www.rsds.org/2/library/articl...lion_block.pdf Abstracthttp://www.ncbi.nlm.nih.gov/pubmed/17100029 See, also, Complex regional pain syndrome type I: efficacy of stellate ganglion blockade, Yucel I, Demiraran Y, Ozturan K, Degirmenci E, J. Orthop Traumatol. 2009 Dec;10(4):179-83. Epub 2009 Nov 4, FULL ONLINE TEXT @ http://www.ncbi.nlm.nih.gov/pmc/arti...Article_71.pdf Abstracthttp://www.ncbi.nlm.nih.gov/pubmed/19888550 Please note: Before these studies came out (and to an extent afterwards) blocks have gotten a lot of bad press as ineffectual for CRPS. But that was only because none of the studies has focused on the length of any patient’s illness. Not coincidently, over the last 5 years or so there has been an explosion of basic science, demonstrating that CRPS is propagated/maintained by very different processes just over the first 2 -3 years of the disease. (References available on request.) Without putting too fine appoint on it, if your doctors are not offering you a series of LSBs with PT at this stage of your illness, it appears (at least at first blush) that you are not being well served by your current treating physicians. Your best bet for finding a good pain specialist in your area may be someone who is board certified by the American Board of Pain Medicine, which accredits almost all pain fellowships in the U.S. To be board certified, a physician must complete such a one-year fellowship (after an appropriate residency) and then pass an 8-hour exam. Here’s a search engine that may assist you in locating someone in your area: http://www.association-office.com/ab...dir/search.cfm There is one caveat, however. The search engine will show the doctor’s “underlying specialty of origin.” I would strongly urge you to avoid physical medicine/physiatry specialists for the treatment of CRPS. They may be great for lower back pain, but it just so happens that this is one of the most complicated problems in neurology today. My first choice would therefore be a pain specialist with training in neurology, with anesthesiology and psychiatry a close second. And there are other therapies that have been shown to be effective only in the early stage of the disease, “mirror box therapy” for one. But it’s just past 3:30 am in LA and I’ve already bombarded you with enough. Again, I’m happy to refer you to the appropriate articles on the RSDSA site, which suggest the rapidly changing nature of the disease in the first few years of affliction. Why it took this long for researchers to begin to consider duration of disease as a variable in looking at the effectiveness of not just blocks, but any treatment, is beyond me. But it is thus. Go back six years in the literature, and disease duration isn’t even considered! Good luck. I realize that I haven’t addressed any of your questions on anesthesia, but in even the medium term, this is far more important. Mike |
Mike- You're reading my mind!
First, thank you for getting back to me right away, I was amazed, and grateful, and relieved to see that you had! Thank you so much for staying up to do that! I live in WI, so if it was 3:30 when you posted there, it was 5:30 (?) here? (I think my post was around 3...idk, I've been up all night, can't see previous thread at the moment, and the combo of Neurontin and pain is doing a number on my brain at the moment) Anyway I'm up anyway, I didn't feel "bombarded" at all- in fact, I'm in nursing school (for now), and have planned on med school my entire life. And w/a lot of family members also in science fields I'm used to being bombarded with "science talk". This, however, is new to all of us, and even with the little I know thus far, I'm actually the expert of the family for once. (silver lining, I guess)
So you brought up some really important points that I've been thinking (and worrying) about a lot the last few days. First of all, even though I trust my neurologists (2 in the practice), I am concerned about the course of treatment right now. Now, they have addressed, and stressed the importance of "catching" it within the three month period, which we did. *My bunionectomy on L foot which was determined to be the cause, was done mid October, and when I was still in a ton of pain (more than my podiatric surgeon was comfortable with), he assessed it at 6week post-op visit and after seeing my foot and the current (clean) xrays, thought it could be rsd/crps and sent me for consult w/neurologist (and an mri, just to make sure it wasn't pin mis-placement, which it wasn't). By the end of week 7, I had seen the neurologist had an EMG, and been back to neuro again and rsd/crps was confirmed. At this point they started me on Topamax and Neurontin, with the instructions to up the doses every week for the first four weeks, and to come back in 1-2 months. (which seemed awfully long to me) b/c by the time i was dx, it had already been nearly 2 mos- so they wanted me to come back at 4mos?! And when I asked about PT- (because my surgeon was also concerned about geting function in my foot back) neuro said that I had to wait until the meds were working and pain was under control, or else it could risk making the crps worse, or cause it to spread...which it's already doing, mind you...up my left leg, and even when they were doing the EMG the dr noticed the color starting to change in my right leg, and sure enough, a week and a half later and the pain has now spread over to the right leg too. I'm scared b/c I'm running out of time before the three month time window closes... my current neuro has mentioned nerve blocks mult. times, but always as something to be done in the future. I didn't realize that was something that needed to be done ASAP. Just yesterday I was talking to my family about trying to hunt down the best dr in the field for a second opinion on this... because it's so rare, and my time is so limited, obviously going to just anybody, even if they're "good" isn't going to cut it. I just don't know how to find the best, I appreciate your tips....cuz that was my first hurdle- I didn't know what the best way to narrow it down was, by specialty I mean...be it by Neuro, or pain specialist, etc. AND to make matters more troublesome, this is something that more than anything I've ever experienced, if one isn't careful, even the best and most appropriate treatments can go terribly wrong if done incorrectly, or not at the right time for the right person...(if that makes sense). So after using your tips to narrow down the options, how does one know who to choose? Of course I'd like to see someone close by where I live, but at the same time, if someone better is accros the country, then I'll go- I'm 23, my whole life is ahead of me, and will be in their hands... And even though I'm completely broke, to the point that I will lose my apt soon b/c I can't get work being disabled, I will still do whatever it takes to make sure I get seen by the best, my future depends on it- and this is one case where I think my family would maybe help me out, and chip in for a plane ticket if need be (fingers crossed). It's all just starting to break my heart..I used to be a gymnast and competitive cheerleader (in high school anyway), and then an avid runner, and horseback rider, and I desperately want that back...I want my life back. There has to be a way- there simply has to be a way. Thanks again- for the enormous help and support, and as always, for listening to me vent...it's more helpfull than any meds I've ever had! (and p.s. I apologize if I'm "jumpy" for lack of a better word, in my posts lately... these meds make me, as I call it, just plain "stupid" lately...they say it will fade. Just bare with me- thanks guys!!) :grouphug: |
Dear Snow/Ms. Whyte -
Fear not, you don't have to fly across the country to find a pain specialist who can hook you up to a series of blocks right away and coordinate them with PT. And besides, you don't have the luxury of waiting two months for an appointment. Giving a LSB under fluoroscopy is as "bread and butter" a procedure as they come for pain management specialists, and while I've heard of some anesthesiologists without pain management training screwing things up, I am personally unaware of that being done by an ABPM certified specialist. There are a few things you can do with names that the ABPM search engine generates. You could run them through PubMed to see if they have written anything, you can ask what hospitals they are affiliated with and whether that is the sole place the doctor works, has offices, etc. Unless they are part of a large and well respected group practice (say, something affiliated with a premier dept. of a medical school) I would be wary of guys who spend a day here and a day there through the week: it typically implies that they are serving in a contract capacity and are regarded by the hospitals they serve as more or less fungible. Then too, you can post names of candidates here in order to receive unfiltered comments on the physicians for whatever they are worth: be careful of strong reviews from someone who may have joined the forum just to make the pitch. Finally, it's important that they take insurance, both for the obvious reason, and also because (at least in my experience) those who don't are typically more interested in making money than making you better. Quite honestly, I'm pretty sure there are guys out there who are secretly relieved when blocks no longer work on a patient and they can get on to what they regard as serious business: implanting pumps and spinal cord stimulators. Effective Jan 1 of this year [I think], doctors were required to disclose certain "emoluments" they received from Big Pharma and the medical device manufacturers, but what was paid prior to the new law taking effect is all water over the dam. And just in case someone wants to suggest you are being alarmist (when actually it’s managed care pushing patients through the most conservative treatments first, and not given the go-ahead for something more invasive until it’s too late to be of any real use) check out the following to see how the other half lives, not that they haven’t earned the right: A Unique Presentation of Complex Regional Pain Syndrome Type I Treated with a Continuous Sciatic Peripheral Nerve Block and Parenteral Ketamine Infusion: A Case Report, Adam Everett, Brian Mclean, Anthony Plunkett, and Chester Buckenmaier, Pain Medicine, 2009 Sep;10(6):1136-9. Epub 2009 Sep 9, FULL ONLINE TEXT @ http://www.rsds.org/2/library/articl...n_Plunkett.pdf: Walter Reed Army Medical Center-Army Regional Anesthesia & Pain Medicine, Washington, DC 20307, USA.http://www.ncbi.nlm.nih.gov/pubmed/19744217 And for articles discussing how a couple of other therapies – “mirror box treatments” and continuous 5-day sub-anesthetic ketamine infusions - also work only relatively early in the disease, see, Body Perception Disturbance (BPD) in CRPS, Lewis J, McCabe CS, Practical Pain Management 2010 Apr:60-66, at 63 and n. 38, ONLINE TEXT @ http://www.rsds.org/2/library/articl..._April2010.pdf, citing, A controlled pilot study of the utility of mirror visual feedback in the treatment of complex regional pain syndrome (type 1), McCabe CS, Haigh RC, Ring EFJ, Halligan PW, Wall PD, Blake DR, Rheumatology 2003;42:97-101, ONLINE TEXT @ http://www.rsds.org/2/library/articl..._Ring_etal.pdf, and, A Pilot Open-Label Study of the Efficacy of Subanesthetic Isomeric S(+)-Ketamine in Refractory CRPS Patients, Ralph-Thomas Kiefer, Peter Rohr, Annette Ploppa, Boris Nohé, Hans-Jürgen Dieterich, John Grothusen, Karl-Heinz Altemeyer, Klaus Unertl, and Robert J. Schwartzman, Pain Med. 2008;9(1):44-54, at 51, ONLINE TEXT @ http://www.rsds.org/2/library/articl...ohr_Ploppa.pdf Finally, I encourage you to spare no effort in pursuing all potentially available cures within the next few months (including, if need be, 10 day out-patient ketamine infusions if the blocks alone do not put you into full remission. Indeed, there is strong evidence that neurocognitive impairments may otherwise kick in for people who have CRPS at the one year mark: such as the ability if this former federal court litigator to keep his medical appointment strait, notwithstanding the fact that anyone else looking at his faithfully maintained calendar could see that there were irreconcilable conflicts on a given day: of course, keeping track of the day if the week would have been helpful. Neuropsychological deficits associated with Complex Regional Pain Syndrome, Libon DJ, Schwartzman RJ, Eppig J, et al, J Int Neuropsychol Soc., 2010 May;16(3):566-73. Epub 2010 Mar 19, ONLINE TEXT @ http://www.rsds.org/2/library/articl...ychol_2010.pdf . And in this regard, you might also wish to check out the 2010 CRPS Blockbuster, Abnormal thalamocortical activity in patients with Complex Regional Pain Syndrome (CRPS) Type I, Walton KD, Dubois M, Llinás RR, Pain 2010 Jul;150(1):41-51. Epub 2010 Mar 24, ONLINE TEXT @ http://www.rsds.org/2/library/articl..._Pain_2010.pdf , as well as its accompanying Commentary Article, Thalamocortical dysrhythmia and chronic pain, Jones EG, Pain 2010 Jul;150(1):4-5. Epub 2010 Apr 14, ONLINE TEXT @ http://www.rsds.org/2/library/articl..._Pain_2010.pdf Time to seriously get underway. Feel free to bounce any and all further questions off this forum or use the PM feature for anything requiring discretion, and generally keep us posted. Mike |
Whew...
Hey Mike,
First of all: I can't thank you enough- your info is invaluable, and you are so good to take the time to share and help... a little bit of weight has already been lifted off my shoulders, now that I feel I have a tiny bit of understanding as to what to do, and where to start. That being said- it's been a busy, and *painful* few days. Every single day is worse than the day before. Today, I broke down and called my neurologist- who, at the moment is still the one treating me (obviously), to see what else I can do for the pain. He said it'd be okay to double up on my vicodin at night (two pills instead of one)...not totally relieving the pain of course, but it's dulled at least. They also got me an appt to go in and see him tomorrow morning, basically I just need to get my pain under control in the short-term...long enough to be able to find a pain management dr and discuss nerve blocks, etc. Not that there is ever a good time to develop this "beast" but now is just terrible...I'm in college, and have had exams every week for the last four, and I have finals through this coming up tuesday...but at least then I have a short break. Hopefully I'll be able to schedule appts w/a great new-found PM specialist by then! fingers-crossed :) I'm wondering if I should tell my neurologist that I'm going to be looking for a pain management specialist to treat me...I'm thinking not, as it will probably either be taken as an insult, or as "drug-seeking" (as I've heard that PM sometimes get a bad rap). either way, probably not a good idea?? I'm going to hold off for now at least. I'm really hoping that tomorrow will be a good day, and that my neuro and I will figure out better pain control- so that after my morning appt, I can dedicate the afternoon to searching, researching, and making calls to my ins company to track down the right doc to help me out of this mess! One more question (for now at least, lol)- I noticed while doing just from some initial, general searching, that A LOT of dr's that come up show up as "accepting new patients?= no" Is that usually accurate? and if I were to call, and "plead my case" are they likely to accept me anyway do you think? b/c it seems like the best dr's wouldn't be accepting new pt's b/c they are good, and therefore are full... which is a bummer. Anyway, again and again- thank you, Mike. You are truly a lifesaver! :hug: |
pain meds
Hi Finz,
Very nicely put! I guess I should say that after 5 years of trying everything and all meds, pain meds, etc. nothing worked for me except Fentanyl patch. I wore it for over 5 years and actually lowered it over the years too (along with everything each doctor had me on). I agree that each person is different and we all have different severities of rsd or other diseases. I have never had my pain totally gone and never get a buzz either on any of the meds. What works for one won't work for another. I think there are times when our pain is worse (like Pete said when weather changes come through) and we all have to do what helps us. I try to not take any pain meds but the burning pain is so bad I get severe chest pains every 3 hours and it feels like I am having a heartattack (EKG is normal) and if I can take something (after meditation, walking, trying everything, etc) that works like someone else said even 10% then it helps us be able to be somewhat "normal." But I think for a doctor to say opiods don't work and expect you not to have anything in case of severe pain is crazy. My thinking is: "We have a hard time getting pain medication from doctors yet...illegal drugs are everywhere (as I have been told by others and it is in the news too). I think the powers that persuade need to give the pain medicine to those like us that have pain and figure out a way to get the drugs off the street...that is the problem not people with rsd or chronic pain getting the medicine they need for when they need it. ok now I am off my soapbox for the moment. Just my two or three cents.:winky: kathy d Quote:
|
Quote:
This is all my pleasure. You are so lucky to have gotten a Dx as soon as you did. It's an amazing feeling to connect with someone who will not have to have a substantial part of her life defined by this condition. That said, I was suffiently clueless to not focus on the fact that I was asking you to do all this stuff right away, while you were in finals. Yikes!!! But here's the deal, unless you can pull the rabbit out of the hat - which is where I'm trying to be of assistance - it may well be five years before you get your pain under control, and by then it may have taken a significant chunk of that young lady you once understood as yourself. You need to find a pain management specialist and start treatment within a month. That person will be able to look after both your short and long term need. Short, meaning oral medications until you can get started on you blocks, long term, meaning getting you out of the swamp, as much as I have enjoyed making your acquaintance. That said, I understand more than you would ever want to know, the perils of being identified as a "drug seeker," simply because of your age. Accordingly, I am not going to suggest any analgesics for you to discuss with your neurologist. Your play is simple and direct: through a moderated RSD support group you were referred to the articles I have provided, specifically: 1. Efficacy of stellate ganglion blockade for the management of type 1 complex regional pain syndrome, Ackerman WE, Zhang JM, Southern Med J. 2006 Oct; 99(10): 1084-8, FULL ONLINE TEXT @ http://www.rsds.org/2/library/articl...lion_block.pdfYou have read the articles and they are compelling. Read them, print them out, and get them to the neurologist at your first opportunity, hopefully today's appointment, time permitting. You understand that the clock is ticking and you are not going to lose this opportunity, an account of which you need to see a good pain management specialist to initiate a series of lumbar sympathetic blocks with concurrent PT. And by the way, that's the tact you take with the pain management specialist once you get to the pain specialist, your emphasis is getting treatment. You can describe at length how bad the pain is, but don't ask the specialist at your first consultation whether s/he can prescribe anything stronger than Vicodin. Of course, if the pain doc. affirmatively tells you that you should consider something else, that's great. But please keep this in mind, this may be the first time in your life you are being called on to play a "long game," all at a time when your need for immediate relief has never been greater! (Think about it like the saunas I used to take with my grandfather, running out of a room that was probably over 180 degrees and then - depending on the season - either sprinting naked down a dock and diving into the lake, breaking the evening ice of early November, or just going outside - equally attired - and rolling in the snow at 20 below. It’s supposed to build character.) Now, you mention going online and finding physicians whose websites indicated they were no longer accepting new patients. Of course I don't know what city you are in, but going onto the ABPM site, i did an unrestricted search for Madison WI and came up with two names. The first was for an older woman who must have been one of the practicing pain physicians who were "grandfathered" into ABPM certification, because she makes no reference to completing any formal pain fellowship and her approach, based on my quick review of her website, was on natural this and that, diet, et cetera. (All the while, thinking of your situation, I hear "tick, tock, tic, tock.") But the other listing was a find: Dr Mark E Schroeder, MDI Googled "Dept. of Anesthesiology University of Wisconsin Madison," it's homepage popped up, I clicked on faculty, and look what I got: Mark E. Schroeder MDhttp://www.anesthesia.wisc.edu/Faculty.php "Special Interest: Regional Anesthesia," otherwise referred to for our purposes as the magic rabbit. :Head-Spin: (Just like our friends at Walter Reed in Article No. 3, above.) And when I ran his name on PubMed - the link is at the far upper right of every NT page – I got four articles he wrote or co-wrote, including one on which he was the principle author, but which I was unable to open, euphemistically titled “Tubing misload allows free flow event with smart intravenous infusion pump.” (A free-flow of a pump containing a 30 day morphine supply will kill most people; a friend of mine got lucky and was only in a coma for a few months.) This is the sort of serious, up-to-date sort of doctor you need to see. Which brings me to my last point, which I should have mentioned earlier: Departments of Anesthesiology or Pain Medicine in medical schools are typically a good place to look. (Don’t ask about Seattle.) They are staffed by sharp people and typically accept any insurance coverage. Just one word of caution, ALWAYS get an appointment specifically with a member of the faculty who you have identified one way or another, or to whom you have been referred. The converse applies as well: unless there is no other choice, NEVER get a general clinic appointment, you may wind up being seen just by a resident or at best a clinical fellow – who goes out in the hallway and confers with someone you will never meet – whereupon s/he returns and says sorry, but there is nothing they can do for you. Because my physician’s lengthy letter of referral never made it through campus mail, I had an experience on that order at Johns Hopkins in 2006. No fun. And so to return to what you tell your neurologist, you do in fact need to tell the neurologist something, because a letter of referal is expected and/or appreciated, if not to make the appointment, then to be presented at the appointment itself. I hope this is helpful. And good luck with the exams, I remember them fondly. :Wheel: Mike |
I sound like a broken record now...but thank you- again, and again, and again! I feel like I should be paying you for all you've been doing to help! But seeing as I can't say it enough, I will hold my sappy thank you's for now, and every so often, you'll get hit with a barrage of them, so be forewarned...deal? lol
Anyway, back to business...I see that you're online, and I have a few more questions for you, just some kinks in the plan that could throw things off at my appt. I sent you a PM, but i'm not sure how that works (like if you are alerted right away, etc), or if there is a chat option... b/c I gotta figure these few things out before I discuss the pain specialist and "plan of action" changes w/my neurologist tomorrow. Just want to be prepared as to what to say if he throws his ideas of "options" that don't sound right, but aren't sounding wrong per se either... (for example, he has mentioned nerve blocks in the past, but as a future thing, but hasn't said who would do them, and has never mentioned me seeing a pain management specialist as part of my care team, which worries me... I'm sorry to keep on hitting you with questions, but you are so darn smart, I'd be a fool not to! I can't tell you how much you have raised my spirits and turned this whole thing around for me. I'm so grateful to have been able to connect with you.. I was so scared when I was dx that I was going to be alone in this, and knowing now that there is someone out there who understands what I'm going through, and is willing to listen to my whining and cries of helplessness, is both a relief and the best gift I could have ever hoped for. Okay, so there's the lack of sleep, sappy-ness talking, or should I say, the rsd talking. So maybe I don't have to apologize for that sort of thing anymore..? lol always looking for the silver linings! |
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. |
Narcotics opiod therapy benifits problems
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 |
Quote:
Just a warning in regards to the Opana and the whole line of morphine based medications. I could not take it because it gave me such a dry mouth which caused problems with my teeth very, very quickly I had to go off. I tried both the opana and the avinza. My RSD is upper extremety so I used to be prone to getting migraines and at that time I was getting them more then I am now. Now I only get one very infrequently. If you start to get a dry mouth and you'll notice it it's very drastic, call your dentist. My dentist gave me another pill to bring the saliva to the mouth but I just didn't want to do it all. The name of the medication I don't remember but it started with an "R". Good Luck, Gabbycakes |
Quote:
If I continue to get migraines like the one i have had since one am this morning, I will be going off it very quickly. I was unable to get oxycondone due tio the abuse in Broward county by the pill doctors. That is why i had to switch. thank you so mcuh for your input. sincerely cz |
Quote:
(Quick bio: RSD left foot, spread up leg, post-surgery). Anyway, I also "played" with different combos of pain meds, meaning: various meds of both types of opiates (instant and extended-release), and the typical assorted "off-label" meds (like gabapentin/Neurontin, etc.), all with my doc, of course, before getting the right "cocktail" as I put it- figured out. As far as specific opiates, my doc has tried nearly all (oddly enough though, not opana) with me. We tried hydrocodone (Vicodin), oxycodone (Percocet), all short-acting. However, I also get migraines, and the oxycodone triggered them in me too. As far as long-acting, we tried Ryzolt ER which is tramadol- a "weak opioid" or "opioid-like" drug- along with one of the aforementioned drugs for breakthrough. Along with gabapentin and topamax, that was my original setup...but it did next to nothing, the pain just kept getting worse. After finding a different doc, who has REAL and extensive experience with RSD patients, I was finally on the right track. The first thing he did was switch my meds (with instructions on tapering off old meds, etc). We discussed options and settled on taking me off everything I was on at the time, except increased my gabapentin (which I'm currently tapering off of now, but I digress), and then added amitriptyline, and hydromorphone (Dilaudid). Now, idk if it's due to coming off of the old meds, or the side effects of the new ones, or just the rsd getting worse, but I admit, I felt terrible for a few days during the initial transition. However, now that it's been about a month and a half of the new mix I'm extremely happy with the results (comparatively, anyway). I'm by no means pain-free, but I'm way better off than when I started. I hate being on so many drugs, but they allow me to think straight, get out of bed, do short errands, and now even start physical therapy- none of which I could even imagine doing. The side effects, although constrictive, i.e. can't drink (bummer for being 23, soon to be 24), or drive while this is all going on (and I live on my own- so my apt has started to feel like a cage), they do have their upside...My dad just retired this year, and so the timing was great- he's able to cart me around whenever I need him (nearly everyday), and although I hate to burden him, it's allowed us to become so much closer than we were (or would have ever been I presume), since we spend so much time together now. I've found that the key to staying sane through all this is to find the silver lining anywhere I can- and since the "drug" aspect of rsd is so full of frustrations, there are many silver linings to be found! Sorry for rambling- best of luck to you! :) |
| All times are GMT -5. The time now is 03:48 AM. |
Powered by vBulletin • Copyright ©2000 - 2025, Jelsoft Enterprises Ltd.
vBulletin Optimisation provided by
vB Optimise (Lite) -
vBulletin Mods & Addons Copyright © 2025 DragonByte Technologies Ltd.