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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)

memory loss and confusion in crps

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Unread 11-27-2012, 12:35 AM   #1
katiek
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Default memory loss and confusion in crps

HI
I am new to the forum and was wondering if anyone else has had memory loss and confusion. I have had crps in my lower right leg for 24 years although it was mainly dormant with only mild flare ups. Last year for no apparent reason i had a huge flare up it spread all over the right side of my body and is continuing to spread. one of the most alarming symptoms i have been having is the memory loss and confusion. I used to excuse it as being a bit of a scatter brain but it is now at the point where i have to write everything down or forget. the confusion is very scary for example i withdrew $100 from the cash point which came out in 2 $50 notes. I was holding it in my hand telling my husband that the machine had only given me 40 bucks he said i was holding 50's. i was looking at them and could see they were 50's but it was like my brain did not accept it I was convinced i had only been given 40. I have also had issues such as forgetting the name of regular thing i was holding an apple and could not remeber what it was called or what i needed to do with it. i have had other issues aswell i was just wondering if anyone else had had anything similar to this
Any advice would be appreciated
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Unread 11-27-2012, 07:45 AM   #2
fmichael
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Default we all know too well about "brain fog"

Quote:
Originally Posted by katiek View Post
HI
I am new to the forum and was wondering if anyone else has had memory loss and confusion. I have had crps in my lower right leg for 24 years although it was mainly dormant with only mild flare ups. Last year for no apparent reason i had a huge flare up it spread all over the right side of my body and is continuing to spread. one of the most alarming symptoms i have been having is the memory loss and confusion. I used to excuse it as being a bit of a scatter brain but it is now at the point where i have to write everything down or forget. the confusion is very scary for example i withdrew $100 from the cash point which came out in 2 $50 notes. I was holding it in my hand telling my husband that the machine had only given me 40 bucks he said i was holding 50's. i was looking at them and could see they were 50's but it was like my brain did not accept it I was convinced i had only been given 40. I have also had issues such as forgetting the name of regular thing i was holding an apple and could not remeber what it was called or what i needed to do with it. i have had other issues aswell i was just wondering if anyone else had had anything similar to this
Any advice would be appreciated
Dear Katie -

Hi, and welcome to the forum. What you've described is a problem for a lot of us. Myself included. Over the years, many people have posted on it, often using a term with which there's immediate mutual recognition: "brain fog."

The best study that was done on this is reported in an article that is freely available of the RSDSA website: Neuropsychological deficits associated with Complex Regional Pain Syndrome, Libon DJ, Schwartzman RJ, Eppig J, Wambach D, Brahin E, Peterlin BL, Alexander G, Kalanuria A, J Int Neuropsychol Soc. 2010 May;16(3):566-73. Epub 2010 Mar 19. (Right-click on the highlighted title to open the article in a new tab.) While the article is pretty technical, its key findings, based on comprehensive neuro-psych testing of 137 RSD/CRPS patients is straightforward once you understand a single term, "Executive functions," which the Wikipedia article of the same name defines as follows:
Executive functions is an umbrella term for cognitive processes that regulate, control, and manage other cognitive processes, such as planning, working memory, attention, problem solving, verbal reasoning, inhibition, mental flexibility, task switching, and initiation and monitoring of actions. The executive system is a theorized cognitive system in psychology that controls and manages other cognitive processes. It is responsible for processes that are sometimes referred to as executive functions, executive skills, supervisory attentional system, or cognitive control. The prefrontal areas of the frontal lobe are necessary but not sufficient for carrying out these functions.
http://en.wikipedia.org/wiki/Executive_functions

So with that, here are the key findings of Neuropsychological deficits associated with Complex Regional Pain Syndrome:
Approximately 35% of patients presented with no neuropsychological impairment (CRPS group1). The remainder of our sample presented with either mild dysexecutive deficits (CRPS group 2; 42% of patients) or a more global profile of cognitive impairment involving reduced performance on tests that assess working memory/mental search (executive tests) along with problems on tests of naming and memory (CRPS group 3; 22% of patients). It is important to mention that, as far as we could determine, these patterns of neuropsychological impairment are independent of the spread of CRPS (i.e., number of limbs involved), illness duration, and medication use.
Bottom line: roughly 2/3's of CRPS patients have either mild or significant impairment of their "executive functioning" - showing up as anything from a loss or organizational skills to a loss of working memory and/or mental search skills - and of that larger group, another 1/3rd have more general problems of recalling names or other memory issues.

Lucky me, I'm in the 22% of the patient population with BOTH ISSUES, and get to walk around with a diagnosis of "mild cognitive impairment." Now, I can still read and understand technical papers, but if you tell me that tomorrow is Wednesday, and I know I have an appointment Wednesday morning, I may very well not realize that my appointment is tomorrow! I'm disorganized to the point that I rarely complete anything I start (certainly if left to my own devices) and can easily become confused in just sorting out ten separate pieces of paper. Then too, I will probably not be able to recall without prompting the name of a movie I saw two weeks ago. (Whereas, in a prior life, I was a business bankruptcy attorney who could if called upon write out a detailed affidavit about everything that was said in a phone call with an opposing counsel three weeks beforehand, when at the time the cal didn't seem important enough to warrant taking notes in the first place.) At my worst, until I started a new treatment, I could often recall the substance of a conversation I had only two days earlier, without having any idea of who I had been speaking with! (And based on the report of my psychiatrist, my most significant humiliation occurred a couple of years ago, when I qualified for SSD along with a recommendation from the reviewing physician that I not be in charge of the administration of my own benefits.)

That said, I have been lucky in getting good medical treatment. I've been on Wellbutrin and Namenda for quite a while and can't even imaging where I would have been without them. But my big break came last summer when - first under the supervision of my treating psychiatrist - I began hooking a 9-volt battery to my head in something called Transcranial Direct Current Stimulation (tDCS) in an attempt to alleviate the pain, spasms and other physical side-effects of CRPS. And I did so along with a number of other people on this forum, through a long running thread called t.D.C.S. Update Could remission be within my reach and your's too? http://neurotalk.psychcentral.com/thread160980-12.html But in a short while, I ran into some technical issues with the use of my tDCS device, and was persuaded to go to Atlanta to see a psychiatrist/pain management physician who specialized in the use of TDCS, James Fugedy, MD.

In Atlanta, I learned that while all of our attention on tDCS was on its application to the motor cortex in our attempts to control pain, it could also be used on a part of the brain closer to the forehead - the "dorsolateral prefrontal cortex" - in order to improve executive functioning. And indeed, there are a lot of published studies that support its use in this regard. But there are also a number of good articles that are accessible to people without medical training. These include to the following:

1. Amping Up Brain Function: Transcranial Stimulation Shows Promise in Speeding Up Learning. Fields RD (2011). Scientific American.

2. Brain Zaps Improve Math. Carpenter, J. (2010). Science Now.

3. TDCS guided using fMRI significantly accelerates learning to identify concealed objects. Clark VP et al (2012). NeuroImage; 59(1): 117–128. [AND]

4. Zap your brain into the zone: Fast track to pure focus. Adee, S (2012). New Scientist, Issue 2850.
I've been using it now for about four months. And while my level of organization is nowhere near recovered, I can tell and people have told me that my word recall is much better, I'm much sharper and faster in conversations than I was, and that gradually, I am in fact doing a much better job of staying on task. And at least for the last few months, I can recall with whom I had that conversation!

Apologize for barraging you with all this information (I tend to do that and regret that on occasion it's brought a few threads to a screaming halt) but in this case, you have asked about a topic that is near, if not dear, to my heart.

Please take a look at the tDCS thread (but be warned that it's now up to 12 pages and 460 posts) and if its of interest to you, hopefully you can have the opportunity to pursue it with a physician who has some familiarity with tDCS, where there is an antibiotic of all things - Seromycin (cycloserine) - that has been shown to greatly increase brain plasticity and thereby the effectiveness of tDCS. I would be more than happy to post links to articles from medical journals to that effect, as well as other "peer-reviewed" journal articles on the benefits of tDCS, should you be interested in either seeing or sharing them with a physician.

I hope this is useful and not too overwhelming.

Mike
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Unread 11-27-2012, 02:34 PM   #3
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Default PS to last

If the thought of finding a trained doctor who is comfortable with tDCS is daunting in itself, I would suggest checking out the geographically based index of physicians listed as "diplomats" of the American Board of Pain Medicine, the most selective of such groups in the country. (It requires that every physician seeking its certification both complete a one-year clinical fellowship, over and above a basic residency, and thereafter pass an 8-hour written exam.)

Once you are there, you can search by "specialty of origin," i.e., the field in which the physician took her/his residency. Without a shadow of a doubt, I would then go for "psychiatry."

Then, armed with a bevy of articles I would be only too happy to share, you might well stand a fighting chance of getting the professional assistance you need.


PPS Forgot an extremely important point: you want to see a pain specialist, trained in psychiatry, who offers "medical treatments" for CRPS: something the person making the appointment in the doctor's office should know off the bat.

I make the point because the entire school of cognitive-behavioral pain management, aka exposure therapy, aka stress inoculation training, aka cognitive processing therapy, aka dialectical behavior therapy, aka acceptance and commitment therapy ("there is no cure so just learn how to function without the assistance of opioids of any kind") comes out of the Department of Psychiatry of the University of Washington's School of Medicine. Ditto, for all intents and purposes, the Mayo Clinic. On account of which they are the last people who are willing to acknowledge that there are effective treatments for chronic pain conditions. After all, they've built what is essentially an industry around the proposition that resistance is futile. (That said, I fully concur in the proposition that bringing resistance - either physical or emotional - to the experience of pain in the moment of its arising only leads to suffering.)
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Last edited by fmichael; 11-27-2012 at 07:34 PM.
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Unread 11-29-2012, 01:29 AM   #4
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Wow, thanks fmichael, that is fantastic info and insight. And Katiek…. You are so not alone. This is the part of RSD that really freaks me out. My memory loss since RSD is almost gotten to the point of scary. I can literally get up, walk 10 feet and be like, what in the heck was I on my way to do. I know this has happened to everyone from time to time, but for me, it is a LOT of times per day. So bad in fact that I will talk to myself on my way, reminding myself of what I’m doing. It’s ridiculous really.

I easily get lost in conversations. I have trouble bringing names of people or things to the forefront of my brain. It’s like I can see a picture of “it” (whatever I am trying to communicate) in my mind, but cannot bring the word(s) to my tongue. I own a video production company, and there is just nothing quite as frustrating as trying to talk with a client and while their talking, or maybe while I’m talking, I am suddenly completely LOST. Makes me feel/look like an idiot. This has gotten so bad that I am in the process of winding down my company and letting my husband take the reins with his new company. The physical symptoms are terrible some days, and with my body and mind unreliable, it just makes sense to pass the baton and take a less active role. Breaks my heart actually, but I feel it is time.

I guess the scariest part for me recently was driving and suddenly just kind of lost … wondering where I was going.

This part of RSD is most definitely frustrating if not downright frightening.
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Unread 11-29-2012, 02:33 AM   #5
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Welcome!

Yes, memory loss is definitely something I have to deal with. I'm a college student, so it's definitely inconvenient. I just have to make sure I write everything down. That's pretty much the only way I can keep myself on track in classes, at work, and in regular life. Confusion is more or less along the same lines. Thankfully, me and my roommate have the same major, so that helps a lot if I forget or get really confused.

I keep apps on my iPhone that help keep me more alert and that help "test" my memory. When I was in PT/OT a few years ago, my OT was pretty concerned with my confusion and memory loss, so he worked with me a lot on that and learning to "manage" with what I had. That helped a TON. It's not much, but I hope it helps some!
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Unread 11-29-2012, 07:03 AM   #6
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Default [moving references to tDCS thread where they belong]

Quote:
Originally Posted by Vrae View Post
Wow, thanks fmichael, that is fantastic info and insight. And Katiek…. You are so not alone. This is the part of RSD that really freaks me out. My memory loss since RSD is almost gotten to the point of scary. I can literally get up, walk 10 feet and be like, what in the heck was I on my way to do. I know this has happened to everyone from time to time, but for me, it is a LOT of times per day. So bad in fact that I will talk to myself on my way, reminding myself of what I’m doing. It’s ridiculous really.

I easily get lost in conversations. I have trouble bringing names of people or things to the forefront of my brain. It’s like I can see a picture of “it” (whatever I am trying to communicate) in my mind, but cannot bring the word(s) to my tongue. I own a video production company, and there is just nothing quite as frustrating as trying to talk with a client and while their talking, or maybe while I’m talking, I am suddenly completely LOST. Makes me feel/look like an idiot. This has gotten so bad that I am in the process of winding down my company and letting my husband take the reins with his new company. The physical symptoms are terrible some days, and with my body and mind unreliable, it just makes sense to pass the baton and take a less active role. Breaks my heart actually, but I feel it is time.

I guess the scariest part for me recently was driving and suddenly just kind of lost … wondering where I was going.

This part of RSD is most definitely frustrating if not downright frightening.
Vrae -

Completely agree with your assessment that the cognitive loses can be the hardest to bear. I said as much to my pain doc maybe 8 months ago - I would happily live with the physical pain of I could just return to full strength on the cognitive ice - and even though the man is "triple-boarded" in psychiatry, anesthesiology and pain medicine, his jaw almost hit the floor. And I was just as surprised he hadn't heard that before.

And just looking at your avatar, which blows up quite nicely on your profile page - see my comment - it's clear to me that your talent deserves more than an early retirement. If it's any help, my boss put on a very nice lunch with a few of my personal clients of long standing a few months after I turned 50: it was bittersweet and nothing to recommend if there are feasible alternatives.

Accordingly, I beseech you to explore tDCS before calling it a day. You could easily get set up with everything you need by way of equipment for just under $400 and with a pain doc/psychiatrist prescribing a brief starting course of Seromycin, along with maybe a weekly booster thereafter (and perhaps one or two other psycho-pharmacologic meds for good measure) there's an excellent chance of controlling at least the cognitive side-effects of your CRPS.

But before I launch too far into the specifics of the medical literature in hopes of encouraging your further exploration of the subject, here's some information of a more general nature that I didn't share above.

First of all, you should be aware that the most important site in the country (world?) for tDCS research is that of the Center for Noninvasive Brain Stimulation, Beth Israel Deaconess Medical Center, Harvard Medical School, in Boston, MA. And the names of two of its principals, who are among the most respected neuroscientists in the country/world, keep popping up a lot in the literature: Alvaro Pascual-Leone and Felipe Fregni. And there's an incredible amount of valuable information on that site. And then, for something completely different, you may want to check out a quick over-view on the impact on a reporter’s immediate sense of a shift in her conscious awareness - specifically dramatically improved concentration and the cessation of internal chatter - Better Living Through Electrochemistry, Sally Adee, Feb. 9, 2012, The Last Word On Nothing.

That out of the way, and to get on with it, . . . [Please see the t.D.C.S. Update Could remission be within my reach and your's too? thread, post 461.]

* * *

Finally, here's one showing the value of using Seromycin with tDCS, for what it's worth:


Consolidation of human motor cortical neuroplasticity by D-cycloserine
, Nitsche MA, Jaussi W, Liebetanz D, Lang N, Tergau F, Paulus W, Neuropsychopharmacology. 2004 Aug; 29(8):1573-8.
I suspect there's more stuff here than I could reasonably ask you to assimilate, but if nothing else, you can print this stuff out to share with a willing physician. And if all you can get in Denver is a pain doc/psychiatrist who's willing to play ball, but only under the lead of another physician, then do what I was finally talked into: make an appointment with James Fugedy, MD for a one-time 4 - 6 hour consultation on a Friday, fly to Atlanta the day before and come back that night. Or the next day if that sounds too daunting. (Alternatively, I'm told there are some very smart pain guys in SLC at Intermountain Healthcare who might be persuaded to play ball, dunno.)

So, simply put, you have everything to gain, while, sadly, you are all too aware of what there is to loose. And please forgive the proselytizing zeal, but there's enough riding on this that I'm perfectly happy to stay up most of the night writing this. (As noted, sometimes I get a little carried away . . .)

And, finally, I understand that sometimes, in the words of Ram Dass, we just "have to take the curriculum" and get on with the changes that have found their way upon us. That said, it can’t hurt all that much to take another shot, as many times as we may have been disappointed before.

Mike
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Last edited by fmichael; 11-29-2012 at 04:22 PM.
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Unread 11-29-2012, 07:38 AM   #7
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Quote:
Originally Posted by nikmcjo View Post
Welcome!

Yes, memory loss is definitely something I have to deal with. I'm a college student, so it's definitely inconvenient. I just have to make sure I write everything down. That's pretty much the only way I can keep myself on track in classes, at work, and in regular life. Confusion is more or less along the same lines. Thankfully, me and my roommate have the same major, so that helps a lot if I forget or get really confused.

I keep apps on my iPhone that help keep me more alert and that help "test" my memory. When I was in PT/OT a few years ago, my OT was pretty concerned with my confusion and memory loss, so he worked with me a lot on that and learning to "manage" with what I had. That helped a TON. It's not much, but I hope it helps some!
Hi. Please consider yourself included in my comments to Vrae. Except, of course, that it's clear you still have the confidence that you're going to pull this one off. So then - if you might - consider tDCS as a highly efficient means of channeling the energy you're blessed with.

And that said, even if you're not in a position to go there right now, let me be clear in complimenting you for all the spirit, drive and determination that you are clearly bring to bear. Every day. And believe me, it shines through in your comment.

Mike
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Unread 11-30-2012, 01:11 PM   #8
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Katie,

I've had CRPS for about 2 years now and find my worst problems occur when I am under stress.

Best advice I can give is to keep things calm (not always easy) and to keep things organized in your home. For instance, keys, purse, sunglasses always in the same place, etc.

Most of all remember to have patience with yourself! You are not alone !

Alisha
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Unread 11-30-2012, 11:43 PM   #9
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Originally Posted by fmichael View Post
Vrae -

Completely agree with your assessment that the cognitive loses can be the hardest to bear... Mike
Hi Mike, thank you so much for all the information. I really do appreciate all the time you put into your response to/for me and others on this topic. My response to you is coming soon. My grandbaby has dropped in for a couple of days and well… she’s three, need I say more? ) Again, I truly appreciate your thoughts and respect all your thoughts; and the research that you have concluded and shared. I hoep you have a nice weekend!
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Unread 12-02-2012, 10:11 AM   #10
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Wow
Thank you so much for the replies, michael I really appreciate the time and effort you must have put into the reply you gave me. I am currently working through the links you have provided, the ones I have read have been very intersting. Thank you for the information on physicians but I live in Australia so it would not be relevant to me. I am glad I am not alone in this. It has been quite distressing, I was diagnosed when I was 7 years old and don't remenber life without crps but I had always been highly functional I always worked full time and participated in sports, the condition really didnt hold me back. So as of a year ago I was pretty much normal. In the last year the changes have been alarming and I do think the cognitive problems are very hard to deal with, another thing which keeps happening to me is I will start to speak and what I hear in my head to what actually comes out of my mouth is very diffrent it comes out in a jumble of words, im not sure if anyone else has had this.As for the memory issues and confusion I saw my general physician last week who sent me for blood tests wanting to rule anything else out before attributing it to the crps. Luckily my GP is very supportive but I have had a lot of issues with my specialists mainly because I refuse medication. I have had all medications avalible bar Ketamine infusions, I seem to have a very low tolerance of medication and will always develop side effects ranging to mild to very servere and any relif i get from the medication is usally cancelled out by the side effects. Due to this my specialists will only see me every 6 months and just send me on pain managment courses, I have lost count of how many I have attended, each cover the same things and in practice do not work for me. I think from reading the other comments on other issues I share the same issue in that I do not think my specialist really belives me. I can have a pain level of 8 but have no outside symptoms of colour changes swelling etc etc, but another day the pain can be mild but my leg and arm will be very swollen. I know I am going off topic, apologies. Anyway I will know by tomorrow if it is anything else causing the memory, confusion issues and will hopefully be able to move forward from there, thanks again for the replies.
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