[Kakimbo]

Please explain...Everything to me...

[fmichael]

Dear Kim -

The attorney's objection to your question would be that it assumes facts not in evidence, i.e. that I know everything. Far from it. A point made clear to me 4 years ago when I was seen by a Professor of Medicine at Johns Hopkins, and suggesting to him the possibility that, with the RSD, my immune system had undergone a "T1/T2 switch" meaning that the T-cells of my immune system which had produced so many wild allergic reactions in me as a child, had flipped to an autoimmune mode, where all but some (untested) drug allergies had gone away, he replied that it was too bad I hadn't gone to medical school. But the thing is (1) I didn't, and (2) with something like 11 incompletes in college, I couldn't have in the first place: a much better man than me didn't get in and was at last report a high school biology teacher.

So I came at this with little or no background, picking up pieces, turning them around, until they seem to fit together. And occasionally, I have the opportunity to get out a three sentence question to a specialist who really understands the essentials of how things fit together at very small levels of detail, and I'll get a one or two sentence reply that will be enough to send me back to PubMed. All this over 9 years. So you are overly kind in assuming what I truly understand.

Complicating this are two minor problems that play out like a metaphor for each other. About 3 months ago I apparently had a hardware malfunction on my old computer, resulting in a loss of registries, such that I can't even boot it in the safe mode to extract the information on my c-drive and have yet to put in the energy to find the right computer tech who can just boot of off a Linux disk and transfer everything to an external hard-drive. Second and related problem is that over the last year or so, I have had increasing problems with word recall, short-term memory and organizational skills, for which I have just been given a clean neurovascular bill of heath by a stoke specialist at UCLA: going down to micro-vascular structures with the use of something called a transcranial Doppler with a CO2 challenge. His suggestion, that it's a rare reaction among anyone of the 27 carefully titrated prescription meds I take every day. Just finding a stimulant to counteract the sleepiness of the CRPS meds (many of which I can't tolerate at all) was hard enough. Now this.

So forgive me, but for the time being, I seem beyond the point of generating an exposition of even my most incomplete understanding of RSD/CRPS, not that it would make a great deal of difference, where I'm no where near being cured myself.

That said, there are two things you should be aware of. The fists are the resources of the "Reflex Dystrophy Syndrome Association of America" (RSDSA) are amazing. Just tool at the two top section's of today's homepage at http://www.rsds.org/index2.html "Recent News" and "Recent Research." Each of which typically lets you open full text links to important articles and broadcasts or copies of the some can be found in the Research and Clinical Articles" section, below. Then, for the general reader, go to "About CRPS," where in the latter sections there are a number of good articles on important topics, written for a reader without a science background. After going through that, and if you feel up to it, you can tackle the granddaddy of free resource pages, "Research and Clinical Articles" at http://www.rsds.org/2/library/articl...ive/index.html which is loosely broken down by subject matter - including "treatments" - with the articles being listed alphabetically by author.

By example, on today's homepage, it lists "Pain exposure physical therapy may be a safe and effective treatment for complex regional pain syndrome type 1: a case series," Jan-Willem Ek, Jan C van Gijn, Han Samwel et al, Clin Rehabil 2009; 23; 1059, but if you use the link provided, you go to Sage Publications, who wants to charge you $32 for access. However, if instead, you go to Research and Clinical Articles and Treatments under that, you'll find the article (alphabetized by mistake under Jan rather than Ek, the imputer apparently taking Ek as the initials EK.) In any event, here's the article, although it is definitely NOT consistent with my own experience with "strengthening PT" which my therapist ultimately called off as a failed attempt that was just making me worse. http://www.rsds.org/2/library/articl...Rehab_2009.pdf

The other thing I wanted to mention is magnesium. At least four years ago, my PM doc told me that I should be taking a full gram a day: I take it all at bedtime where it can make people sleepy. I have come to appreciated it's importance. Check out the following, courtesy of the RSDSA's Research and Clinical Articles page, "Multi-day low dose ketamine infusion for the treatment of complex regional pain syndrome," Goldberg MR, Comsky R, Scaringe D, et al, Pain Phys. 2005;8:175-179, FREE FULL TEXT AT http://www.rsds.org/2/library/articl...e_ketamine.pdf

Abstract
BACKGROUND: Complex regional pain syndrome (CRPS) is characterized by pain that is out of proportion to the injury and is regional in distribution. A large body of literature supports a dynamic change in the physiology and structure of central pain projecting neurons mediated through the N-methyl-D-aspartate (NMDA) receptor. A critical factor in central sensitization seems to be the release of the magnesium block on the NMDA receptor with influx of calcium and initiation of intracellular cascades. Current literature supports the effectiveness of ketamine in blocking central sensitization through its effects on the NMDA receptor. Recent treatment with anesthetic doses of ketamine in severely ill patients with generalized CRPS prompted our interest in a lower dose therapy. OBJECTIVE: To report on the efficacy of low dose outpatient ketamine infusion for the treatment of CRPS diagnosed by International Association for the Study of Pain (IASP) criteria in patients who have failed conservative treatment. DESIGN: Open label, prospective, pain journal evaluation of a 10-day infusion of intravenous ketamine in the CRPS patient. METHODS: Patients diagnosed with CRPS by a single neurologist were assigned to receive a 10-day outpatient infusion of ketamine supervised by an Anesthesiologist/Pain Management Specialist. The infusion was administered in a short procedure unit after each patient had been instructed on how to complete a pain questionnaire. Monitoring consisted of continuous ECG, pulse oximetry, and non-invasive blood pressure every 15 minutes. Patients made journal entries each day prior to the infusion of 40-80 mg of ketamine. The subjects were also asked to rate their pain intensity using a verbal analog pain scale of 0-10 and the affective component using a verbal scale of 0-4. RESULTS: There was a significant reduction in pain intensity from initiation of infusion (Day 1) to the 10th day, with a significant reduction in the percentage of patients experiencing pain by Day 10 as well as a reduction in the level of their "worst" pain. The nadirs of pain were lower by Day 10 with a significant reduction in the incidence of "punishing pain." Moreover, there was a significant improvement in the ability to initiate movement by the 10th day. CONCLUSION: A four-hour ketamine infusion escalated from 40-80 mg over a 10-day period can result in a significant reduction of pain with increased mobility and a tendency to decreased autonomic dysregulation. [Emphasis added.]

PMID: 16850072 [PubMed]

http://www.ncbi.nlm.nih.gov/pubmed/1...m&ordinalpos=2

AND

"Intravenous magnesium for complex regional pain syndrome type 1 (CRPS 1) patients: a pilot study," Collins S, Zuurmond WWA, de Lange JJ, van Hilten BJ, Perez RSGM, Pain Medicine. 2009;10(5):930-940, FREE FULL TEXT AT http://www.rsds.org/2/library/articl...nd_deLange.pdf

Abstract
OBJECTIVES: To explore the feasibility of intravenous magnesium administration as a potential candidate intervention for a large size trial in Complex Regional Pain Syndrome Type 1 (CRPS 1). DESIGN: Randomized clinical trial. SETTING: Outpatient pain clinic. PATIENTS: Ten CRPS 1 patients. INTERVENTIONS: Eight patients received 70 mg/kg magnesium sulphate infusions in 4 hours for 5 days. For blinding purposes, 2 patients received equal amount NaCl 0.9% solutions (data not analyzed or presented). Interventions were accompanied by standardized physical therapy. OUTCOME MEASURES: Pain was assessed using an 11-point Box scale (three times daily for a week) and the McGill Pain Questionnaire. Skin sensitivity was measured with the Semmes Weinstein Monofilaments, (other) impairments with the Impairment Level Sumscore. In addition, functional limitations (Radboud Skills Questionnaire, questionnaire rising and sitting down) and quality of life (Short Form-36 [SF-36], EuroQol) were evaluated. Assessments were performed at baseline, 1, 3, 6, and 12 weeks after intervention. RESULTS: Mild systemic side effects were experienced and the infusions were locally well tolerated. Pain was significantly reduced at all follow up compared with baseline (T1: P = 0.01, T3: P = 0.04, T6: P = 0.02, T12: P = 0.02). McGill sensory subscale improved significantly at T1 (number of words chosen: P = 0.03 and pain rating index: P = 0.03). Impairment level (P = 0.03) and quality of life (EuroQol P = 0.04, SF-36 physical P = 0.01) were significantly improved at T12. No improvement was found for skin sensitivity and functional limitations. CONCLUSION: Intravenous magnesium significantly improved pain, impairment and quality of life and was well tolerated. The results of this pilot study are encouraging and suggest that magnesium IV as a treatment in CRPS 1 should be further explored in a large size formal trial design.

PMID: 19496957 [PubMed - indexed for MEDLINE]

http://www.ncbi.nlm.nih.gov/pubmed/1...m&ordinalpos=1

That said, even though magnesium is available over the counter in most markets, to say nothing of pharmacies, people should check with their doctors first before taking it, where a gram/day is a clinically significant dose. That said, since I've been on it, my pain is rarely at the 8.5 - 9 range, where it seemed to be at least every other day. But then again, I've used so many other treatments, including the off-label use of Zometa (zoledronic acid, a biphosphonate), for about the same time. So who knows?

And, finally, on the controversial topic of biphosphonates, although I take great issue with the authors' "Clinical Implications," where they note with distain that

The current guideline published by a consensus report in 1998
does not recommend biphosphonates in CRPS I treatment. Stanton-
Hicks et al. only recommend the use of subcutaneous calcitonin for
a mild effect on spontaneous pain, the use of oral or intravenous
biphosphonates was not part of their recommendations (Stanton-
Hicks et al., 1998) . . .

when 3 of the 4 trials studied were not published until after 1998, see generally, "Biphosphonates for the therapy of complex regional pain syndrome I – Systematic review," Brunner F, Schmid A, Kissling R, Held U, Bachmann LM, Eur J Pain 2009;13:17-21 at 19, FREE FULL TEXT AT http://www.rsds.org/2/library/articl...d_Kissling.pdf

I hope this is helpful, even if it's not everything I claim to know.

Mike

[mrsD]

One has to be careful with megadoses of magnesium.

1) you should have a renal panel done to make sure your kidneys are working right. Toxicity with magnesium is rare, but typically comes in renally impaired patients.

2) also some supplements are useless ...magnesium oxide is one of those. It is not appreciably absorbed at all.

I have a long detailed magnesium thread here:

http://neurotalk.psychcentral.com/thread1138.html

Please read it carefully, and especially the part about ELEMENTAL values. People and doctors get confused about this.
For example using magnesium oxide... which is about 40% magnesium: 400mg of this will yield about 8mg absorbed or thereabouts. It is the lowest bioavailability on the market.

The NIH link on my thread above, gives percentages for some common chelates.
Some labels today are including elemental values, but not all.
If you have a small tablet or capsule of chelate, don't expect much in the way of absorption...a magnesium chelate will be huge. 1000mg of magnesium malate for example delivers about 150mg of elemental magnesium and it is a huge tablet! Not all magnesium from any tablet is absorbed...they are all less than 100% and magnesium oxide is at the very bottom. Not all the calcium you consume is absorbed either, it is at 20-25% depending on the form taken. These heavy metals just do not have 100% absorption. If you find you are having looser stools (harder to notice if you use narcotics) you are losing magnesium that way.

I use Ionic Fizz often because I can adjust my dose easily. I get loose stools from magnesium commonly because of a GI birth defect I have. I really like the Ionic Fizz because it is solubilized and works very quickly, and you can adjust your dose more easily.

At the end of the thread, is a recipe for making your own magnesium cream. This looks very promising for RSD patients, where you could apply it to the affected area and improve circulation quickly that way. Soaking in Epsom salts also helps. We do that on PN commonly.

[allentgamer]

About 3 months ago I apparently had a hardware malfunction on my old computer, resulting in a loss of registries, such that I can't even boot it in the safe mode to extract the information on my c-drive and have yet to put in the energy to find the right computer tech who can just boot of off a Linux disk and transfer everything to an external hard-drive

I think I may be able to help you here bro.

There are two things that could be done that could allow you access to that information on your hard drive.

The first one is to download the ubuntu operating system, and create a disk. Then just boot from the disk drive and viola! You now have access to the information, and can copy it over to a flash drive. This may not work if the drive has completely failed.

Or

You can take the hard drive out of the computer and install it in another computer as a second hard drive. This will also allow access to the drive, and allow you to transfer the information you want to a flash drive, or right to the C drive of the computer you are using to access this information.

[Jomar]

Originally Posted by allentgamer

I think I may be able to help you here bro.

There are two things that could be done that could allow you access to that information on your hard drive.

The first one is to download the ubuntu operating system, and create a disk. Then just boot from the disk drive and viola! You now have access to the information, and can copy it over to a flash drive. This may not work if the drive has completely failed.

Or

You can take the hard drive out of the computer and install it in another computer as a second hard drive. This will also allow access to the drive, and allow you to transfer the information you want to a flash drive, or right to the C drive of the computer you are using to access this information.

I've had to do that a few times. or start from scratch..
I have used file recovery programs on messed up hard drives and was able to save many of my files and info.

some recovery programs
http://download.cnet.com/1770-20_4-0...ware&tag=ltcol

Some library books about Linux, or magazines stores with a Linux selection will have various Linux live DVD/CD's inside. Live DVD means you can run it right from the DVD drive it's slower, but you can also install it.
http://www.linux.org/dist/
easiest ones are Ubuntu & Mepis

[Sandel]

Scientists discover new treatment for chronic pain condition

February 1, 2010
Scientists at the University of Liverpool have discovered that treating the immune system of patients with Complex Regional Pain Syndrome (CPRS) leads to a significant reduction in pain.

http://www.physorg.com/news184269793.html



Sandra

RSD/CRPS Research and Developements

[SandyS]

This is very interesting. Thanks for posting.

Sandy

Originally Posted by Sandel

Scientists discover new treatment for chronic pain condition

February 1, 2010
Scientists at the University of Liverpool have discovered that treating the immune system of patients with Complex Regional Pain Syndrome (CPRS) leads to a significant reduction in pain.

http://www.physorg.com/news184269793.html



Sandra

RSD/CRPS Research and Developements