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 02-22-2011, 07:26 PM #11
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Default Hi

Do you have touble with muscle wasting...that is a big problem for my and was wondering if this tx helped with that?


TY

Debbie
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Old 02-23-2011, 02:46 AM #12
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Quote:
Originally Posted by ballerina View Post
For me, the loss of executive function has been every bit as bad as the pain and other symptoms. I took a chance given the odds of success for me was about 70% and I am convinced that cortical reorganization is the key for me. I expect this will wear off in a month to 9 months. I am using this time to push the limits in PT. I am having good results with mirror therapy and graded motor imagery as well as exercises for stretching and balance.

Who is John Lester? That name does not ring a bell but neither do many names from the past two years.
Dear Ballerina -

I totally get what you're saying about the significance of neurocognitive losses. Funny thing is, when I told my pain doc a couple of months ago that if given the chance, I'd keep my wits and take the pain at full bore, his jaw came close to hitting the floor. He had obviously never heard that expressed before. But it's such an easy call, I'm now starting to work with pain patients, teaching mindfulness techniques for experiencing but not identifying with physical pain. And it's really just a matter of paying close attention to that from which you would otherwise run and flee, until it's no longer an issue.

Granted, it's a lot easier to this on retreat than when you are subject to the social demands of others in a big city, etc. But that's just a matter of making the same problem a little more complicated. Only there your immediate attention has to be on the emotional responses arising within, before they are acted upon.

That said, I'm told that having equanimity with loss of cognitive function is a a strong practice in it's own right. And where we're not exactly in a position to bargain as to the curves that are sent our way, I best keep attending to all phenomena as it arises and stop being picky about what's on the menu.

Right?

Mike


PS John Lester ran a host site called Brain Talk, where this forum had been in its most recent previous incarnation, before the server crashed c. 2006 - 2008, taking with it an unusually rich body of threads and posts. But the place definitely had its quirks . . .

Last edited by fmichael; 02-23-2011 at 03:34 AM. Reason: ps
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Old 02-23-2011, 07:09 AM #13
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Quote:
Originally Posted by debbiehub View Post
Do you have touble with muscle wasting...that is a big problem for my and was wondering if this tx helped with that?


TY

Debbie
Hi Debbie,

Your question regarding muscle wasting is hard for me to answer in an objective manner. Given my prior profession, teaching classical dance, my body worked like a well oiled machine. On Saturdays alone I taught from 9:00 am until 7:00 pm with no breaks and felt fresh and energized when I finished. Since May of 2010 I have been unable to work and I now occupy an alien body that has difficulty even walking without balance problems, sometimes resulting in falls. Although I have extremely poor muscle tone and some atrophy in my right hand I have done hand to hand combat to maintain range of motion and severe atrophy of my right arm.

When diagnosed in February of 2010 I immediately began to educate myself. I stumbled upon Hoosmand's website and have used much of what I learned there to do what I could to prevent atrophy. I follow Hooshmand's protocol of 20 minutes of exercise and twenty minutes of rest from 7:00 am until bed. It has been exhaustive but I believe it is the reason I am not much worse now.

My recent tCDS treatment has enabled me to increase what I am able to do. Since I am very attuned to subtle changes in my body due to a dance background the improvement in my muscle tone to me is of the atomic bomb variety. Although I still cannot do more than twenty minutes of exercise at a time, and I am still quite limited in terms of the types of exercise I do, I push the limit of what I can do during periods of exercise.

So, yes, the tCDS has improved my muscle tone and atrophy.

Hope this helps!

Teri
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Old 02-23-2011, 04:22 PM #14
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That said, I'm told that having equanimity with loss of cognitive function is a a strong practice in it's own right. And where we're not exactly in a position to bargain as to the curves that are sent our way, I best keep attending to all phenomena as it arises and stop being picky about what's on the menu.

Right?

Mike

Hi Mike,

Ah, the ever changing menu of CRPS.

When I began rapidly deteriorating both physically and cognitively I persuaded my neurologist to prescribe Namenda for pain management. As a bonus I saw an improvement in my cognitive problems. I recall in an earlier post that you also tried Namedna at one time. Did it help you in the area of executive functioning?

You sound like you are coping very well in this area. If you need more help I strongly recommend tCDS. The mental clarity it has provided me has greatly improved my quality of life.

Teri
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Old 02-23-2011, 04:33 PM #15
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Question Knotkova and Cruciani

Ballerina -

I just found this abstract on PubMed:

Non-invasive transcranial direct current stimulation for the study and treatment of neuropathic pain, Knotkova H, Cruciani RA, Methods Mol Biol. 2010;617:505-15.
Department of Pain Medicine and Palliative Care, Beth Israel Medical Center, Institute for Non-Invasive Brain Stimulation of New York, New York, NY, USA. HKnotkov@chpnet.org

Abstract
In the last decade, radiological neuroimaging techniques have enhanced the study of mechanisms involved in the development and maintenance of neuropathic pain. Recent findings suggest that neuropathic pain in certain pain syndromes (e.g., complex regional pain syndrome/reflex sympathic dystrophy, phantom-limb pain) is associated with a functional reorganization and hyperexitability of the somatosensory and motor cortex. Studies showing that the reversal of cortical reorganization in patients with spontaneous or provoked pain is accompanied by pain relief stimulated the search for novel alternatives how to modulate the cortical excitability as a strategy to relieve pain. Recently, non-invasive brain stimulation techniques such as transcranial magnetic stimulation (TMS) and transcranial direct current stimulation (tDCS) were proposed as suitable methods for modulation of cortical excitability. Both techniques (TMS and tDCS) have been clinically investigated in healthy volunteers as well as in patients with various clinical pathologies and variety of pain syndromes. Although there is less evidence on tDCS as compared with TMS, the findings on tDCS in patients with pain are promising, showing an analgesic effect of tDCS, and observations up to date justify the use of tDCS for the treatment of pain in selected patient populations. tDCS has been shown to be very safe if utilized within the current protocols. In addition, tDCS has been proven to be easy to apply, portable and not expensive, which further enhances great clinical potential of this technique.

PMID: 20336445 [PubMed - indexed for MEDLINE]
http://www.ncbi.nlm.nih.gov/pubmed/20336445

Do you have an understanding as to what more is to be published next month? Read: I am all eyes/ears, etc.


Mike
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Old 02-23-2011, 06:14 PM #16
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Default Done

I had this treatment about 2 years ago...it did absolutely nothing for me (as usual)
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Old 02-23-2011, 06:15 PM #17
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Quote:
Originally Posted by ballerina View Post
. . . I recall in an earlier post that you also tried Namedna at one time. Did it help you in the area of executive functioning?

You sound like you are coping very well in this area. If you need more help I strongly recommend tCDS. The mental clarity it has provided me has greatly improved my quality of life.

Teri
Dear Teri -

Forgive me once again, I had started my last past to you before your's was on the board, and didn't catch it until now, in case my last came across as a little sterile.

Truth is, I've been on Namenda since it was prescribed on a prophylactic basis (30 mg/day) in 2003 (later joined by Razadyne) and while I was initially aware of greater clarity of thought in coversations with others, sense of alertness, etc. on the days I had taken my Namenda, ALL of the deterioration of executive fuctioning, as well as the loss of my short term and working memory, has occurred on Namenda's watch.

And yes, you have sufficiently engaged my attention in tCDS, to the point that I (truly) await the publication of the study to which we have referred with baited breath.

Mike
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Old 02-23-2011, 06:52 PM #18
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Do you have an understanding as to what more is to be published next month? Read: I am all eyes/ears, etc.


Mike[/QUOTE]

Hi Mike,

I believe the abstract you found is not the published CRPS/tCDS study. I will get the article you referred to.

While I was at Beth Israel in early February Helena Dr. Knotkova told me that she did not expect the CRPS/tCDS study to be published before March, maybe later. She indicated that the group of CRPS patients originally enrolled in the tCDS study were continuing in phase two of the study. Phase two is studying among other variables, the number of repeated treatments needed to maintain pain relief. Knotkova is also conducting several additional tCDS clinical trials including fibromyalgia and cancer patients.

I will keep you posted!

Teri
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Old 03-08-2011, 09:31 PM #19
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Unhappy A correction

It was just brought to my attention that one of our members with extensive CRPS/RSD has been in touch with a neurosurgeon at Columbia University, who investigated using MCS but reported back that "MCS works best with unilateral pain," and declined to proceed. (I gather there are as of yet unpublished reports of poor results in patients with generalized CRPS/RSD.)

On hearing this, I double checked Motor cortex electrical stimulation applied to patients with complex regional pain syndrome, Velasco F, et al, Pain 2009, and yes, although not specifically commented on by the authors, when you go through the individual case histories of the study participants, their CRPS was indeed confined to a single upper-extremity: possibly including including the shoulder.

I apologize for not catching this, as well for raising hopes that do not appear to be supported by all of the evidence, even if some of it is not yet published.

Hopefully, there will be better results with tDCS for patients with generalized CRPS, but what little I've heard so far on that score isn't all that promising.

Mike

Last edited by fmichael; 03-09-2011 at 05:25 PM.
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