[katiek]

Hi. I am 31 and have had crps for over 20 years. After a flare up a few years ago the crps spread and became worse. I have posted on here before about memory problems but in the last few months i have had some really bad episodes. I was just wondering if anyone else had these issues. Firstly i have the normal brain fog and forgetfulness but it is now at the point where i am worried about leaving the house on my own. A few days ago i came home from the shops when i emptied my handbag i found a few items in there i checked my recipt and they were not on there. I dont remember putting anything in my bag and would never intentionally steal something. Also i have put cups in the food pantry nearly taken something out of the oven without an oven glove. Hubby stopped me just in time. I am now at the point where i have to write everything down that i need to do or i completly forget about it.my main concern is that i often seem to put myself at risk but dont realise it or comprehend the danger. I was just wondering if anyone has had similar problems.

[Nanc]

Hi Katie! So sorry you are dealing with this. I have had RSD for almost 22 1/2 years. I can relate to your cognitive issues 100%. My RSD has spread so much the last couple of years and with that, I noticed the "mind" problems. I am nothing like my former self. Just in the last week I picked up a hot pizza stone that I had just taken out of the oven, didn't even think about putting on an oven mitt. I put something in the toaster oven and forgot all about it, forgot to pay our cell phone bill (could've sworn I already did it). Husband doesn't want me using appliances when he is not home. I struggle with finding simple words to finish a sentence. I also have a hard time comprehending some of the simplest things.

The last day I worked was December 28, 2012. I was a financial & human resource manager. I was known for being so detailed and having a mind like a steel trap. I knew I was in trouble when I started making mistakes at work and forgetting to do time sensitive things.

This is so unlike me, and I have had a hard time with accepting it. While I am sorry that you are dealing with this too, I am glad to know I am not alone.

All the best,
Nanc

[katiek]

Hi nanc. Thanks for your reply. I am sorry you are having these issues. But i am glad i am not alone. It is very frustrating i felt i knew and could handle everything crps threw at me but the cognitive issues were a real curveball. I am most scared of losing my independence.my friend suggested placing laminated instructions next to my appliances so i can hopefully avoid injury. The oven tray really scared me . I hope you get some improvment soon

[Vrae]

I’ve had CRPS II for nearly 10 years. I can relate to you both. In the last year or so my short term memory is gone. I get lost in conversations with people. I search for words that I’m trying to say and spend time describing the word I can’t bring to my mouth. I can see in my mind’s eye the thing I’m trying to describe but can’t get the word out. This happens several times a day.

Also, several times a day I get to a room and I’m like “what the hell did I come in here for?” I know everyone has done that at one time or another, but for me it is several times daily. So much so that I get mad and start to talk to myself on my way so I won’t forget what I’m doing. I’ve had this happen while driving too.

I love to cook, or at least I use to. So I have tons of recipes in my head. I can no longer cook and talk to someone at the same time. Inevitably I will forget a step or an ingredient if I do not give this task my undivided attention.

Of all the things that CRPS brings, this really freaks me out. I’m not even sure of anything that can be done to improve on this problem.

[anonymous730]

It is eerily creepy and brings me comfort, (if that makes sense), reading your comments. Your comment about having a word in your mind and not being able to get it to your mouth-I just wrote that almost exactly in a reply to my first post on this forum-actually one you replied too that once again your words could come right out of my mouth they are exactly how I feel.

At first when I described my mind issues I would just say that I couldn't remember a word to describe what I'm saying and people would just blow it off love yea yea we all forget things. But it wasn't like that-it wasn't like, "what's that actors' name?" and you can't remember. Finally I was able to describe it the same way you said to a t-I can see it in my mind but can't actually say it. It is so weird!

Now I do wonder if it's from the RSD or the meds or a combo of both. I am on neurotin, which definitely messes with my brain, and also Percocet and Norco. I feel like the neurotin is the main culprit but maybe not? I feel much more comfortable thinking that it's the meds causing it and not the disease because then I feel as though I can be back to normal one day, by not taking the meds, because if its the RSD, then it could be forever????

Originally Posted by Vrae

I’ve had CRPS II for nearly 10 years. I can relate to you both. In the last year or so my short term memory is gone. I get lost in conversations with people. I search for words that I’m trying to say and spend time describing the word I can’t bring to my mouth. I can see in my mind’s eye the thing I’m trying to describe but can’t get the word out. This happens several times a day.

Also, several times a day I get to a room and I’m like “what the hell did I come in here for?” I know everyone has done that at one time or another, but for me it is several times daily. So much so that I get mad and start to talk to myself on my way so I won’t forget what I’m doing. I’ve had this happen while driving too.

I love to cook, or at least I use to. So I have tons of recipes in my head. I can no longer cook and talk to someone at the same time. Inevitably I will forget a step or an ingredient if I do not give this task my undivided attention.

Of all the things that CRPS brings, this really freaks me out. I’m not even sure of anything that can be done to improve on this problem.

[Vrae]

yeah I don't know. But it is awful, that's for sure. In the meantime I can't live without Neurontin, so I suppose I will just keep fumbling for words and through my days.

[Vrae]

So I found this while reading up on movement disorders (I suffer from) along w/ other CRPS II symptoms. It made me think of this post so I thought I would share. Here is the web link to read the full article. http://crps-rsd-a-better-life.blogsp...-pain-and.html

And here is the abstract written by:
David Borsook1 email, Jaymin Upadhyay1 email, Eric H Chudler2 email and Lino Becerra1 email
1 P.A.I.N. Group, Harvard Medical School, 115 Mill Street, Belmont, MA 02478, USA
2 Department of Anesthesiology, University of Washington, Box 356540, Seattle, WA 98195, USA author email corresponding author email
Molecular Pain 2010, 6:27doi:10.1186/1744-8069-6-27

A key role of the basal ganglia in pain and analgesia - insights gained through human functional imaging

Abstract

The basal ganglia (BG) are composed of several nuclei involved in neural processing related to the execution of motor, cognitive and emotional activities. Preclinical and clinical data have implicated a role for these structures in pain processing. Recently neuroimaging has added important information on BG activation in conditions of acute pain, chronic pain and as a result of drug effects. Our current understanding of alterations in cortical and sub-cortical regions in pain suggests that the BG are uniquely involved in thalamo-cortico-BG loops to integrate many aspects of pain. These include the integration of motor, emotional, autonomic and cognitive responses to pain.


The electronic version of this article is the complete one and can be found online at: http://www.molecularpain.com/content/6/1/27

[Djhasty]

I keep telling myself that it is all the meds I am taking. At least I am hoping so. I've lost simple words from my vocabulary. For instance, the word 'was.' There are others too. Usually 3-4 letter common words. I have to ask for a definition or look one up. Very humiliating.

Before I lost my ability to drive, I would get lost going from my building a few blocks to my husbands. I drove it every day. We carpooled. I didn't necessarily end up in a different place, it was that I didn't recognize the place I was in.

I stay out of the kitchen. I tell my husband it is his turn. I cooked for the first 25 years while the kids were home. June 28 was our 33 year anniversary. He has a way to go to catch up.

[katiek]

Hi. It is a huge relif to see I am not alone. I don't take medication so it can't be that for me. I have the same problems with speech, I speak very slowly to make sure I have the best chance of getting the words out, but most of the time I use the wrong word or the word I want to say is on the tip of my tounge but comes out in a jumble of sounds. I am seeing my Dr tomorrow and will discuss it with him again

[Nanc]

Originally Posted by katiek

Hi. It is a huge relif to see I am not alone. I don't take medication so it can't be that for me. I have the same problems with speech, I speak very slowly to make sure I have the best chance of getting the words out, but most of the time I use the wrong word or the word I want to say is on the tip of my tounge but comes out in a jumble of sounds. I am seeing my Dr tomorrow and will discuss it with him again

I am with you Katie, I am not on any meds to blame this on I also experience that same thing with the word(s) right there on the tip of my tongue and just cannot get it out....frustrating!!

Let us know what your dr says about this!