I want to thank you all for posting about tDSC. This is the first I have heard of it and have been watching this thread with fascination. I asked my pain doc about it and he said he has heard of it but would not write a RX for it. He wouldn't give me a reason why not (I don't think he implants SCS). I have a question. Does it help with muscle spasms? I have had RSD for many years and a few years back got stuck sitting in traffic for an extended period (after a fenzian treatment). The result is terrible muscle spasms in the glutes & hamstrings and inflammation in the ischium. I've had several injections (trigger point & cortizone) and another ischium injection scheduled for next week. Long story short, I have not had lasting relief from any of these. I cannot sit without pain & as the day progresses so does the pain level. Maybe if I can get the muscles to quit spasming, the pain will decrease.

Linmarie

Sorry you are many years into CRPS. No doubt you have tried numerous meds and treatments. Muscle spasms only add to the misery. My concern is that given your history of treatment failures, your physician would not explain his refusal to support you in a trial of tDCS. My hunch is that he is not knowledgeable in the application of tDCS to CRPS.

Since you are asking about the effectiveness of tDCS for muscle spasms it sounds like you either did not get an answer from you doctor, or were shut down by his/her response and did not have the opportunity to ask additional questions.

Like every treatment for CRPS some folks are responders and some are not.
For those who are responders most get relief from spasms. I had very little relief from spasms until tDCS. I truly do not know where I would be today without this treatment. Similarly, I don't know where I would be if I had been anything but implacable and relentless in the face of a steady stream of physicians who impeded my progress, either due to ignorance, financial gain or both.

Since your doctor will not write a scrip for the tDCS device if you are serious about trying this treatment you can purchase the equipment yourself and find out if you are a responder. Another option is to consult with a physician who is knowledgable about tDCS and its application to chronic pain.

If you have been treating with this pain management doctor for an extended period of time and still cannot sit at the end of the day it sounds as though this doc is out of treatment options for you.

And yes, when the spasms lessen so does the pain.

Hope better days are ahead for you!!!

It is with total disbelief that I am sharing a new injury. This morning I took a bad fall on gravel in the street. This fall resulted in a sprained ankle and a nasty bruise. For the first few hours it just felt like a sprain. By the afternoon it began to burn like fire, swell and turn bright red. Now the burning is moving toward my knee and alodynia has set in. I had been on maintenance tDCS but as a result of the fall I am resuming my regular treatment schedule since I know the burn only too well.

Please forgive me for not answering my pm's but I have to tend to this for the near future.

Dear Terri,

So sorry to hear about the injury to your foot. If you haven't aleady started
doing so, start taking extra Vitamin C. Studies show an 80 percent reduction in risk. More than once when my daughter has suffered injury she
had taken this. I think the studies were 500 mg but my daughter took 1000
mg daily for weeks after her injuries.

You will be in my evening prayers for a speedy recovery. Hang in there.

Joydee

Dear Ballerina -

If you haven't done so already, call your pain doctor ASAP. A fresh injury creating spread in a previously unaffected extremity is in all likelihood a fresh case of CRPS, where you were clearly aware of a lot of inflammation at the site of the ankle sprain. And here I admit to be working somewhat off the reservation - but not far - where a number of studies out there (of new treatments which they hope to show success with) have restricted their sample population to people who either (A) have developed RSD within the last 6 months OR (B) have had spread to "a new extremity" within that time period.

How do we prove this? It’s really quite straightforward. Fresh cases of CRPS are associated with high levels of certain cytokines. See, Neuropeptides, neurogenic inflammation and complex regional pain syndrome (CRPS), Birklein F, Schmelz M, Neuroscience Letters 2008;437:199-202. And among all of the cytokines that have been measured, one class stands out for practical purposes: TNF-[alpha] and its soluble Receptors I/II.

Why? Because unlike - say - Interleukin 12 - tests for TNF-[alpha] & Co. are available from commercial medical labs while those for IL-12 seem a little harder to come by. On the other hand, according to one abstract I've found, the level of statistical significance for Substance P is not nearly as high as that of either TNF-a or IL-12. Systemic inflammatory mediators in post-traumatic complex regional pain syndrome (CRPS I) - longitudinal investigations and differences to control groups," Schinkel C, Scherens A, Köller M, Roellecke G, Muhr G, Maier C, Eur J Med Res. 2009 Mar 17;14(3):130-5:

Abstract

OBJECTIVES: The Complex Regional Pain Syndrome I (CRPS I) is a disease that might affect an extremity after trauma or operation. The pathogenesis remains yet unclear. It has clinical signs of severe local inflammation as a result of an exaggerated inflammatory response but neurogenic dysregulation also contributes to it. Some studies investigated the role inflammatory mediators and cytokines; however, few longitudinal studies exist and control groups except healthy controls were not investigated yet.

METHODS: To get further insights into the role of systemic inflammatory mediators in CRPS I, we investigated a variety of pro-, anti-, or neuro-inflammatory mediators such as C-Reactive Protein (CRP), White Blood Cell Count (WBC), Interleukins 4, 6, 8, 10, 11, 12 (p70), Interferon gamma, Tumor-Necrosis-Factor alpha (TNF-a) and its soluble Receptors I/II, soluble Selectins (E,L,P), Substance-P (SP), and Calcitonin Gene-Related Peptide (CGRP) at different time points in venous blood from patients with acute (AC) and chronic (CC) CRPS I, patients with forearm fractures (FR), with neuralgia (NE), and from healthy volunteers (C).

RESULTS: No significant changes for serum parameters investigated in CRPS compared to control groups were found except for CC/C (CGRP p = 0.007), FR/C (CGRP p = 0.048) and AC/CC (IL-12 p = 0.02; TNFRI/II p = 0.01; SP p = 0.049). High interindividual variations were observed. No intra- or interindividual correlation of parameters with clinical course (e.g. chronification) or outcome was detectable.

CONCLUSION: Although clinically appearing as inflammation in acute stages, local rather than systemic inflammatory responses seem to be relevant in CRPS. Variable results from different studies might be explained by unpredictable intermittent release of mediators from local inflammatory processes into the blood combined with high interindividual variabilities. A clinically relevant difference to various control groups was not notable in this pilot study. Determination of systemic inflammatory parameters is not yet helpful in diagnostic and follow-up of CRPS I. [Emphasis added.]

PMID: 19380284 [PubMed - indexed for MEDLINE]

And in this regard, please note that the generally utilized test for ongoing inflammatory processes, that for "C-Reactive Proteins" has been shown to have no correlation with acute CRPS in the first instance, both in the above referenced study, and an earlier study by the same authors. "Inflammatory mediators are altered in the acute phase of posttraumatic complex regional pain syndrome," Schinkel C, Gaertner A, Zaspel J, Zedler S, Faist E, Schuermann M, Clin J Pain 2006 Mar-Apr;22(3):235-9.

So, where any rheumatologist should be able to test for your serum levels of TNF-[alpha] and its soluble Receptors I/II, if they are elevated, it follows (going back to Birklein and Schmelz, 2008) that you - in all likelihood - have suddenly developed have a fresh case of CRPS. And this is actually good news, at least with respect to the newly injured area: 3 - 4 days of continuous regional anesthesia or a solid round of perhaps 6 - 8 LSB's over the course of three weeks (I found that the "bilateral block" works best) with PT everyday following a block when it's at the height of its effectiveness can and should knock out the "fresh case" in its tracks.

And here, you would be talking about starting the therapy within a week or two of the onset of symptoms, a treatment unheard of in the United States, outside of the U.S. Military, not to be confused with its dumping ground, the VA. See, e.g., 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, Everett A, Mclean B, Plunkett A, Buckenmaier C, Pain Medicine 2009 Sep; 10(6):1136-9. Epub 2009 Sep 9 (rapid resolution of an unusual presentation of complex regional pain syndrome type I in 17 y.o. female West Point cadet after four days of treatment with a continuous sciatic peripheral nerve block and a concomitant parenteral ketamine infusion).

Good luck and God’s speed!

Mike

I haven't been here the past few weeks; very busy with work, and my wife returned to ECT, with improvement after just 4 treatments. It's been the single most effective treatment for her.

Have you tried botox injections for the muscle spasm? Many pain physicians will do this, though insurance may balk. At one time it helped my wife's pudendal neuropathy...until the stuff hit the fan.

Ditto here, Terri.

And Mike, I love your cerebral and methodical approach. Keep it up!

Many thanks for the phone calls, messages, pm's and emails. Please forgive me for my late replies. I have devoted every second of my days to beating the spread to my left ankle and leg.

I am amazed that as of this morning the spread appears to be totally gone.

Here is what I did. My PM doc had nothing more than blocks to offer me. I decided against that for the following reasons. In the past, he had not even recommended blood draws and insisted on a virtual colonoscopy for fear of igniting a spread. Additionally, no pain management doctor I have seen has ever had a patient go into remission with blocks, despite many with early intervention, and despite the conventional wisdom that early blocks can promote remission. My pain management doctor has had patients that have experienced spreads after blocks. I personally know of three patients who have experienced serious spreads and have learned of additional examples through forums. Even if I had a block that helped short term I did not want a short term solution.

Left to my own devices I doubled my Low Dose Naltrexone and took anti inflams to deal with the inflammation issues. I immediately began an aggressive desensitization program every fifteen minutes all day long. Basically, what ever my leg hated I gave it a quadruple dose plus more. I refused to give into my body screaming for oxycodone although admittedly that was almost not successful. I went back to 50 mg of Trazadone for sleep issues and night sweats.

Instead of pain meds I used mirror therapy at least every 90 minutes (sometimes once an hour)to knock the pain down enough to move, bear weight and do desensitization activities, (very miserable) and used a TENS unit on my leg.

I went back to my treatment schedule of tDCS twice a day for twenty minutes each and I am still treating.

The only color change that remains in my leg is the bruising from the original fall. The extreme burning, alodynia, sensitivity to air and clothing is gone. The accompanying exacerbation of the addition miserable symptoms (extreme sensitivity to light, loud noises, cold rapid heart beat, sweating all over joint pain, etc. had lessened.)

Basically everything I did dealt with preventing change in brain plasticity and cortical reorganization. The most important thing is that I did nothing invasive.

Only time will tell if I have dodged this bullet for good.

Hope this is helpful and useful information to someone!

Wow...I applaud you for pushing yourself to go through all that...it must have been really hard. As one who has experienced spread following a block, I completely understand your decision to not go through that. The other stuff may be more painful in the short term but it appears that you have done all the right things and that you succeeded in your fight against the RSD spreading into your leg. Just goes to show that there is rarely just one thing that helps...but rather it is about taking all those treatments that you know and using them in combination to see results. Thank you for sharing all this...spread to new areas is always very scary and it is encouraging to hear that you CAN do something about.

For me...I will start my twice daily treatments with tDCS today. Fingers crossed that it is successful. I know there will probably be some trial and error involved in finding the right electrode placement and everything but I am very optimistic. Thanks again to everyone for their posts and suggestions.

Dear Ballerina,

This is wonderful news!!!!

Joydee