Reflex Sympathetic Dystrophy (RSD and CRPS) Reflex Sympathetic Dystrophy (Complex Regional Pain Syndromes Type I) and Causalgia (Complex Regional Pain Syndromes Type II)(RSD and CRPS)

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Old 09-30-2011, 11:55 PM #1
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Originally Posted by alt1268 View Post
Karen,
I am so sorry for the fact that your going through this. I just got on. How did your shot/shots go?
Pretty good I think. He only did one block, the second time for my right foot. They could not get my back numb enough to go really deep?? At least I think that's what happened I was crying from the pain from the block (I did not cry or have pain like this last time). So, he only did the one. Now my back hurts so badly that I went to bed at 8:30pm?? Or so. And now I am wide awake at 11:45pm from pain in back. Is this normal? It sure was sore last time but not screaming to wake the neighbors like this is. I hope I am just being a baby. (Would not be the first time). My BIGGIST fear is that the RSD is in my back. But I am well aware that I am an alarmist and this is just the kind of thing I could flip out over for no reason. I think I need to just make some tea, take a deep breath, and stop being such a freakjob about my back pain. Thanks for Anita, sorry 'bout the long winded answer. Karen ps. How are you doing sweetie?

Last edited by Karen67; 09-30-2011 at 11:58 PM. Reason: i can't spell to save my life...
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Old 10-01-2011, 12:36 AM #2
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Karen,
Sorry you had such an issue. I had that and during the procedure I asked for more versed, sorry but I am all about the meds when something hurts. There is no need to make a person suffer when there is all these meds to help.
Back pain is normal. Mine still hurts from time to time, but I think it is because of my bad limp, cause every step I take hurts, I sleep most of the time now in the recliner, and the shots. When they did the trial stimulation my back hurt so bad I didn't sleep and had to take prn pain meds. It took me 2 days before I could even start playing with the stimulator to see if it would help. It didn't. Hopefully tommorrow, which is now today will be better. lol
you get my drift.
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Pretty good I think. He only did one block, the second time for my right foot. They could not get my back numb enough to go really deep?? At least I think that's what happened I was crying from the pain from the block (I did not cry or have pain like this last time). So, he only did the one. Now my back hurts so badly that I went to bed at 8:30pm?? Or so. And now I am wide awake at 11:45pm from pain in back. Is this normal? It sure was sore last time but not screaming to wake the neighbors like this is. I hope I am just being a baby. (Would not be the first time). My BIGGIST fear is that the RSD is in my back. But I am well aware that I am an alarmist and this is just the kind of thing I could flip out over for no reason. I think I need to just make some tea, take a deep breath, and stop being such a freakjob about my back pain. Thanks for Anita, sorry 'bout the long winded answer. Karen ps. How are you doing sweetie?
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Old 10-01-2011, 08:29 AM #3
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Karen,
I just got on too and I am so sorry to read about your doc visit. I'm having a bit of trouble this morning too. I don't do well in chilly weather.
Is it cool where you're at? The cooler air can't be good. Did the block do anything lasting for your foot?
I was hoping for you that the doc would be able to succeed in doing both blocks for you and you have relief...
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Old 10-02-2011, 07:41 AM #4
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Hi Anita and Jimbo, I am feeling pretty down right now. The symp. nerve block did not work for as long as the one I had two weeks ago. Thlast time I was pain free in my right foot for about 24 hours. This block (also for my right foot) only gave me pain relief for about 8-10 hours. Isn't it suppost to work the other way around? I am also on new ER type pain meds that make my heart race and give me a mild headache. Sheesh...I am in full whiner mode this mornin' folks. Sorry 'bout that... any advice on what body part to have my next block on?? It is in another 2 weeks and I think my PM doc wants to do my right foot again. I'm not sure i want that. I want to start doing them for my hands. What has been your response from your PM docs when YOU suggest the course of treament? Any and all advice is sure welcome. Thanks you guys. BIG *hugs* Karen
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Old 10-02-2011, 08:20 AM #5
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Karen,
I'm so sorry it didn't work for you. I think it's suppose to get longer releif each time although my neurologist stopped after the first series in my neck didn't last.
If you have a request for a certain treatment I believe the doc has to at least talk about it. The only thing I have to go by is when I speak to my neurologist about certain areas or symptoms she listens and examines that area but so far I've followed all of her advice. Being that it's our bodies, I would imagine that we should have the last say in what goes on.
Maybe after you tell your doc the block didn't work he/she will be willing to try the other area.
Remember the headaches I was getting in the middle of my brain? The Nortriptyline seems to be helping...
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Old 10-02-2011, 04:32 PM #6
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Dear Karen -

Sorry for getting in late here, but how long has it been since you have first had onset of RSD/CRPS symptoms? The reason I ask is because it's pretty well established that they loose their usefulness the farther out you go. Check out the following piece, written for patients, on the always useful site of the RSDSA:
Clinical Q & A: Can there be too many sympathetic nerve blocks for the treatment of CPRS?
By William E. Ackerman, III, MD

Yes and no. Not all CRPS patients respond to this therapy. If patients get transient relief, allowing them to participate in physical therapy or not have to increase their medications, sympathetic nerve blocks are indicated. If no relief is noted after two blocks, then why repeat them? The results will not be favorable. Sympathetic blocks must be performed early in this disease to be effective. At that time, 2 to 3 blocks are usually effective.

The longer the duration from the onset of CRPS until the first injection, the worse the results. For example, a patient with CRPS for 12 months will have poor results with a sympathetic block. However, if a patient receives an injection within the first 2.5 to 3 months, the results should be good. This is why an accurate diagnosis of CRPS must be made in a timely fashion. Failure to do so may condemn a patient to life-long severe pain.

A sympathetic nerve blockade, however, is not a totally benign procedure, with side effects that include elevated blood sugars, rash, itching, weight gain, soreness at the injection site, bleeding, seizures, and death. Blockades are also more efficacious with decreased vasomotor activity, but become less effective with increased vasoconstriction. Therefore, the effectiveness of a sympathetic nerve blockade is based on the duration of the symptoms and blood perfusion in the affected area.

RSDSA Review, Winter 2008
http://www.rsds.org/publications/Ack...inter2008.html

For Dr. Ackerman’s more technical analysis, see, Ackerman WE, Zhang JM, Efficacy of Stellate Ganglion Blockade for the Management of Type 1 Complex Regional Pain Syndrome, South Med J. 2006 Oct;99(10):1084-8, FULL ONLINE TEXT @ http://www.rsds.org/pdfsall/Ackerman...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.

Comment in South Med J. 2007 Apr;100(4):411-2; author reply 412.

PMID: 17100029 [PubMed - indexed for MEDLINE]
http://www.ncbi.nlm.nih.gov/pubmed/17100029

I hope this information is useful.

Mike

Last edited by fmichael; 10-02-2011 at 07:18 PM. Reason: typos
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Old 10-02-2011, 07:51 PM #7
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I am wondering is that the reason my dd pain mangement doctor had not yet agree to do the nerve blocks because her rsd been over 2 years.?
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Old 10-02-2011, 08:39 PM #8
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I am wondering is that the reason my dd pain mangement doctor had not yet agree to do the nerve blocks because her rsd been over 2 years.?
I believe that is correct. I've been told by my neurologist that after two years of having RSD it's so well established in the nervous system that it's better to use meds for pain control. Blocks are more of a first line of defense type of thing...
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Old 10-02-2011, 11:28 PM #9
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I am wondering is that the reason my dd pain mangement doctor had not yet agree to do the nerve blocks because her rsd been over 2 years.?
Likely so. However, in contrast to the two-year cut-off point provided to jimbo by his neurologist, the study by Ackerman and Zhang found that 25 patients receiving stellate ganglion blocks for (upper body) CRPS broke out into three groups: those who had complete, partial and no relief whatsoever, and of those 25 who had either complete or partial relief, the longest duration between the onset of symptoms and the beginning of treatment with blocks was ONLY 13.5 weeks: or just a little over 3 months. [But see below.]

But that doesn't foreclose other avenues. Has anyone raised the use of biphosphonates with you? They are not appropriate for everyone - in particular people who need significant dental work - but one major review of treatments found them the to be the ONLY treatment that met the authors, standards for effective CRPS treatment in a literature review completed in 2009, which for sn unknown reason, did not consider ketamine one way or another. See, Treatment of complex regional pain syndrome: a review of the evidence [Traitement du syndrome de douleur re´gionale complexe: une revue des donne´es probantes], Tran DQH, Duong S, Bertini P, Finlayson RJ, Can J Anesth. 2010;57:149 - 166, at 151 - 156, FULL ONLINE TEXT @ http://www.rsds.org/pdfsall/Tran_Duo..._Finlayson.pdf:

Abstract
PURPOSE: This narrative review summarizes the evidence derived from randomized controlled trials pertaining to the treatment of complex regional pain syndrome (CRPS).

SOURCE: Using the MEDLINE (January 1950 to April 2009) and EMBASE (January 1980 to April 2009) databases, the following medical subject headings (MeSH) were searched: "Complex Regional Pain Syndrome", "Reflex Sympathetic Dystrophy", and "causalgia" as well as the key words "algodystrophy", "Sudeck's atrophy", "shoulder hand syndrome", "neurodystrophy", "neuroalgodystrophy", "reflex neuromuscular dystrophy", and "posttraumatic dystrophy". Results were limited to randomized controlled trials (RCTs) conducted on human subjects, written in English, published in peer-reviewed journals, and pertinent to treatment.

PRINCIPAL FINDINGS: The search criteria yielded 41 RCTs with a mean of 31.7 subjects per study. Blinded assessment and sample size justification were provided in 70.7% and 19.5% of RCTs, respectively. Only biphosphonates appear to offer clear benefits for patients with CRPS. Improvement has been reported with dimethyl sulfoxide, steroids, epidural clonidine, intrathecal baclofen, spinal cord stimulation, and motor imagery programs, but further trials are required. The available evidence does not support the use of calcitonin, vasodilators, or sympatholytic and neuromodulative intravenous regional blockade. Clear benefits have not been reported with stellate/lumbar sympathetic blocks, mannitol, gabapentin, and physical/occupational therapy.

CONCLUSIONS: Published RCTs can only provide limited evidence to formulate recommendations for treatment of CRPS. In this review, no study was excluded based on factors such as sample size justification, statistical power, blinding, definition of intervention allocation, or clinical outcomes. Thus, evidence derived from "weaker" trials may be overemphasized. Further well-designed RCTs are warranted. [Emphasis added.]

PMID: 20054678 [PubMed - indexed for MEDLINE]
http://www.ncbi.nlm.nih.gov/pubmed/20054678

Having said this, there has been a fair amount of discussion of biphosphonates on this forum through the years. I would encourage you to use the "Search" function at the top of NT pages, looking for threads with "biphosphonates" in the title.

Mike


PS As both Lit Love and Dubious note, and I acknowledge in the following response to Dubious, while this may apply in the majority of cases (and the blocks in fact stopped working for me after a few months) there are exceptions to every rule, this one included. Specifically, all bets are off where there is ongoing neuro-inflammation, typically where there has been spread to a previously unaffected limb withing the last few months, and apparently in some clear cases of CRPS Type II as well.

Last edited by fmichael; 10-03-2011 at 01:47 AM. Reason: PS
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Old 10-02-2011, 08:39 PM #10
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Dear Karen -

I'm writing as a follow up to the post I put up earlier this afternoon, because I know that it's possible that the information I provided could be more unsettling than not.

But, it's been my experience that confusion and mixed messages in the end just fan the flames of fear. And the most terrifying aspect of any experience - including RSD/CRPS - is that we are too often flooded with a thousand things at once.

That's where it's most helpful to take things in bite-sized pieces, separate out the strands so to speak. Use the resources of sites like the RSDSA http://www.rsds.org/index2.html and American RSDHope http://www.rsdhope.org/ to more fully understand what's going on with the disease, while at the same time not losing touch with the non-RSD parts of our bodies or how - in the exact moment it's happening - pain stimulus impacts us emotionally. To the point that if the emotional experience is simply overwhelming, we break it down some more, until we can be aware of each "primary emotion" (fear, sadness, anger etc.) and ultimately get the the point that we can acknowledge and experience each without the need for resistance or guarding on our part and it's no longer a big deal.

It's also important to literally take a few deep breaths and focus on the fact that with each exhale, you experience rest in your body, along with everything else that's going on. You can also look behind your closed eyes and see either primarily light, darkness or a mottled mixture of the two, and then rest for a while in whatever is most comfortable. And then be aware that your experience includes physical rest as much as it does physical or emotional pain. And that rest in your body is ALWAYS available as a place of refuge.

Then, as with physical pain, and in time, we can acknowledge each sensation as it arises. After 10 years of this stuff, I think of it as standing securely on a ledge, under a gigantic waterfall. We may get very wet from the spray, but at the same time, we're not being pulled into the vortex below.



Mike

PS That said, we all slip off the wagon from time to time, even for weeks at a time. But it's no big deal, we just catch ourselves and get back on again.

PPS Another trick along the same lines is learning that we don't have to define ourselves in terms of what we have always wanted to be. It's like at just a little distance, we can see how hard we were always trying to identify ourselves in terms of some preexisting notion or model. And since that was ultimately a matter of individual choice - societal expectations were there of course - we are free to redesign the template at any time, as circumstances dictate: or not use one at all. (To this day, I can relate my own epiphany, 18 months or so into this thing, in exacting detail.)
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