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!

sorry snowWhyte for all your pain, i have never been on one of these sites before, so you guys bare with me.. i suffer from a different pain, i wont go into right now -i could blow your mind with all that i suffer from, but i my eyes pain is pain if you deal with it everyday, why dont you try percocet it should not hurt your stomach, i should know- i have a ulcer from all the pain and meds i have taken the past three years-i also have to be careful because i have a bleeding disorder. maybe this will help suesue

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

Abstract
INTRODUCTION: The purpose of this study was to examine the efficacy of stellate ganglion blockade (SGB) in patients with complex regional pain syndromes (CRPS I) of their hands.

METHODS: After IRB approval and patient informed consent, 25 subjects, with a clinical diagnosis of CRPS I of one hand as defined by the International Association for the Study of Pain (IASP) criteria, had three SGB's performed at weekly intervals. Laser Doppler fluxmetric hand perfusion studies were performed on the normal and CRPS I hands pre- and post-SGB therapy. No patient was included in this study if they used tobacco products or any medication or substance that could affect sympathetic function. The appropriate parametric and nonparametric data analyses were performed and a p value <0.05 was used to reject the null hypothesis.

RESULTS: Symptom onset of CRPS I until the initiation of SGB therapy ranged between 3 to 34 weeks. Following the SGB series, patient pain relief was as follows: group I, 10/25 (40%) had complete symptom relief; group II, 9/25 (36%) had partial relief and group III, 6/25 (24%) had no relief. The duration of symptoms until SGB therapy was: group I, 4.6 +/- 1.8 weeks, group II, 11.9 +/- 1.6 weeks and group III, 35.8 +/- 27 weeks. Compared with the normal control hand, the skin perfusion in the CRPS I affected hand was greater in group I and decreased in groups II and III.

DISCUSSION: The results of our study demonstrate that an inverse relationship exists between hand perfusion and the duration of symptoms of CRPS I. On the other hand, a positive correlation exists between SGB efficacy and how soon SGB therapy is initiated. A duration of symptoms greater than 16 weeks before the initial SGB and/or a decrease in skin perfusion of 22% between the normal and affected hands adversely affects the efficacy of SGB therapy.

PMID: 17100029 [PubMed - indexed for MEDLINE]

http://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

Abstract
BACKGROUND: This study was performed to evaluate the treatment of complex regional pain syndrome (CRPS) type I with stellate ganglion blockade.

MATERIALS AND METHODS: We performed three blockades at weekly intervals in 22 patients with CRPS type I in one hand. The patients were divided into two groups depending on the time between symptom onset and treatment initiation. Group 1and 2 patients had short and long symptom-onset-to-treatment intervals, respectively. Pain intensity, using a visual analog score (VAS), and range of motion (ROM) for the wrist joint were assessed before and 2 weeks after treatment and were compared using nonparametric statistical analysis.

RESULTS: Treatment produced a statistically significant difference in wrist ROM for all patients (P < 0.001). VAS values showed an overall decrease from 8 +/- 1 to 1 +/- 1 following treatment, and there was a significant difference in VAS value between groups 1 and 2 (P < 0.05).

CONCLUSIONS: We concluded that stellate ganglion blockade successfully decreased VAS and increased ROM of wrist joints in patients with CRPS type I. Further, the duration between symptom onset and therapy initiation was a major factor affecting blockade success.

PMID: 19888550 [PubMed - indexed for MEDLINE]PMCID: PMC2784060

http://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

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!!)

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.

Abstract
OBJECTIVE: To successfully treat a patient with complex regional pain syndrome, refractory to standard therapy, to enable a rapid and full return to professional duties.

SETTING: This case report describes the rapid resolution of an unusual presentation of complex regional pain syndrome type I after four days of treatment with a continuous sciatic peripheral nerve block and a concomitant parenteral ketamine infusion. The patient was initially diagnosed with complex regional pain syndrome (CRPS) I of the right lower extremity following an ankle inversion injury. Oral medication with naproxen and gabapentin, as well as desensitization therapy, failed to provide any relief of her symptoms. She was referred to the interventional pain management clinic. A lumbar sympathetic block failed to provide any relief. The patient was diagnosed with CRPS I and was admitted for treatment with a continuous peripheral nerve block and parenteral ketamine.

CONCLUSION: This case suggests therapeutic benefit from aggressive treatment of both the peripheral and central components of CRPS.

PMID: 19744217 [PubMed - indexed for MEDLINE]

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

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.
kathy d